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Wednesday, January 7, 2015 11:11 AM CST

Oh how time flies when you are having fun. At least that's the expression. I can say that the last 10 years haven't been fun, at least not when it comes to cancer, but they have certainly gone by. It was exactly 10 years ago today that a young boy was bruising and tired and a doctor visit changed our lives. When the words were said, "Mr & Mrs McMahon, there is no easy way to say this, but your son has cancer". Our lives were forever changed. I can remember that hematologist as clear as day. I can remember the horror and the disbelief I felt all too clearly. And while I remember the day, I am happy that 10 years have gone by.
Its time to look forward. It's the beginning of the last year of chemo. It's funny how the last time he had chemo, during his first time he was diagnosed, I knew it wasn't over. Sure I was hoping and praying that it would be over. But it was a father's intuition that told me it wasn't. This time, I have a feeling of peace. This time I don't have a feeling that it will return. This time the beast was killed and life, as we once knew it, will move forward without cancer.
They have told us that July 19th is his last day of chemo. (Provided he has no setbacks between now and then). That means there are 193 days left in this process. Depending on how you look at it, 193 days shipwrecked on an island, is a long time. 193 days left of chemo therapy means a walk in the park for Connor. That equates to 193 days of pills. That number can also be broken down to an average of 40 pills per week and there are just 28 weeks left until July 19th so that is 1,140 pills to swallow. There will also be 2 more spinal taps and 6 more injections through the port in his chest for the poison they inject in his veins to kill the deadly cancer that grows inside of him.
As this journey comes to an end, I find it to be bittersweet. Never in the almost 6 years of actual chemotherapy has Connor used cancer as a scapegoat for his actions. His mom and I made it very clear with him at 3 years old when he was diagnosed that we believed he would beat cancer and we would not allow him to use it as a crutch. He never has. I don't believe that his character would have allowed him to do that. We always knew in our hearts that Connor would live with cancer and not die from it. Deep down, we believe he knew it too.
In just 2 short months Connor turns 14. As I reflect on that milestone, I can't help but think about the past 2 years. How he was robbed of his 12th birthday when he was diagnosed just 2 days before it. And I also think of him laying in a coma and believing, if only for a moment, that he would die. Even as I write this the emotions of that event are rushing back into my head and making me tear up. But we never gave up. We never lost hope that he would win this fight. We knew it wouldn't be easy, but hell, life isn't easy. But life is also what you make of it. We don't stop to ask why us. We are more likely to ask, why not us? We are as well equipped as anyone and Connor is stronger than most. So why not us? Sure the path of no cancer would be easier, but then we would all be different. I would be a different dad, Michelle would be a different mom, Sean would be a different big brother and Declan would be a different little brother. And the reality is, we all like who we are and who we have become and cancer helped to shape that direction. We believe that it brought out the best in all of us, while at times, exposing us at our worst. But by exposing those flaws, we believe we were able to make ourselves better. Not everyone gets that luxury. So in that, we are blessed.
Yesterday, Connor weighed in at 126 pounds and 5'4" tall. That's a far cry from the 90 pounds and 4'10" boy we brought in just 2 years ago and certainly very far from the 3 year old that was brought to the hospital 10 years ago today. He may have been at the hospital yesterday, but he wasn't "in" the hospital like he was back then. This year will also mean that Connor will have had chemotherapy for his cancer for 6 years. It will mean that he has more years of chemo than he can remember being healthy. This July of 2015 will also mean the start of life after cancer. It will be an attempt to start a childhood stolen by cancer and who wouldn't look forward to that.

Thursday, April 3, 2014 10:59 AM CDT

Connor has a chemo appointment today, and we will also be saying goodbye to a nurse that has been there for us during our journey. She shows genuine excitement when she sees Connor, running up to him and giving him a bear hug when she sees him. In her, I see compassion and love for a patient. To her, it seems to me anyway, he is not just another kid that comes to the hospital with cancer. I don't know how she does it. Or any
nurse on a pediatric cancer floor for that matter.
I am sure that ethically they are not supposed to emotionally care for their patients. They are probably told that they can't get emotionally
attached so as to not impair their judgement during the care of that patient. But as a human being, how do you not care? How do you look into the eyes of a child being ravaged by a disease that they can not completely fathom, and not have some level of emotional grip on your heart and not begin to tear it out. How do you look at the siblings of that patient and not put a name to them and stop thinking of their brother or sister as simply as patient number 6014275? Is this even possible? I'm sure that there may be some, but through this process, I have not met that nurse.
I have seen nurses work in complete darkness in my child's room at 2am, watched as they have taken his blood pressure or his temperature and not woken him up. They are more stealth than any Marine I ever served with. But even in the most trying of times, they have been there with a caring look or a comforting touch. They seem to always know just what the child,or the parent needs. They truly are the unsung heroes.
As for Andi, I can't say enough. It seemed like when Connor was in the hospital she was working. I don't know when she goes home because this past year, Connor was in the hospital a lot. But there she was. Offering
that kind smile, those warm hugs. and on way to many occasions, a shoulder to cry on.
In just 2 weeks, nurse Andi will move on to her next adventure in life and leave CHOA. And while we will miss her terribly, she will remain in our
hearts and memories of bad times made better because of the caring words of a nurse. Her ability to make our son comfortable when he was not, is something that you can't learn. You have to be born with that. There is a special place in this world for people like Andi, and an even more special place in the next world. But we are just glad for the glimpse of our life that we got to have Andi in it, and we know that some other lucky kids will get her in their lives now. We are happy to have had her in ours even if it wasn't nearly long enough.
Thank you Andi, and to all of the Andi's out there that make this journey more tolerable.

Thursday, January 16, 2014 12:03 AM CST

HUGE milestone today. Maintenance began officially at high noon. We arrived at the hospital at 9:30am and Connor received his height and weight. He is 98.78lbs and 5'1 1/4 tall. He is over the moon about his height. He has been waiting on a growth spurt and it appears that it is now here.
While Connor's counts were high enough today to officially start the maintenance phase of his treatment, they were not high enough to get 6mp and methotrexate. We will try to start those next week. Entering maintenance is a big step. It is significant because treatments become more "routine" and stable. The first year of treatment is always the most intense. (which is the understatement of a lifetime). The first year is more about hospital stays and emergency rooms. The drugs are intense and side effects can be devastating. Thankfully, we are now past that. Chances of him being hospitalized are dramatically decreased as each day passes.
He will have 7 cycles of maintenance over the next 18 months. His completion date for his treatments is...July 15, 2015!!! He will now have an office appointment once a month and take 4 different chemo drugs at home (all of the same medicines he was on several years ago). He will continue to have a spinal tap every 3 months where they take out a small amount of spinal fluid to make sure there are no cancer cells present. It's more of a routine and less "reactive". It seems like we have been living in a reactive mode since March 23, 2013. I believe we are all ready for some calm.
When Dr. Bergsagel said "Do you believe it Connor? You are starting maintenance today.", tears just came. There wasn't a dry eye in the room. In the last 10 months I feel like our family has been pushed to our limits. And here we are, starting the final leg of the journey to our son being cancer free...again.
The chances of this cancer coming back after beating it once were less than .01%. The chances of it coming back a third time are even less. But as you can imagine, I don't buy into the statistics that much anymore. Just 10 months ago I was under the impression that we were done with cancer. But I was proven wrong. So now I will just live with the thought that I should cherish my kids everyday even more than I have in the past. If I do nothing else I will consider it to be a success.
Our next appointment is 2 days before we leave for Quebec Canada to play in the Pee Wee Quebec hockey tournament. It's the largest Pee Wee hockey tournament in the world and Connor's team is representing the state of of GA. It's an honor to even be invited to such an event. Connor will even be staying with a local family in Quebec City while I stay at a hotel. It will allow him to experience the local culture and cuisine from our neighbors to the north. Connor is a picky eater so fries with gravy may be as far down the cuisine road as he goes, but he will try.
The point of that last paragraph is to say this. Life goes on. We let nothing hold us back and Connor's limits are those that he puts on himself. We look forward to the next chapter of maintenance and a life where cancer is nothing more than a memory. Thanks for always looking out for updates and thank you for your prayers. They have been a lifeline for all of us.

Tuesday, December 31, 2013 11:59 PM EST

New Years Eve 2013. The day when we set our resolutions to live more like the person we want to be as opposed to the person we are. The day we look back on the last 12 months and gauge how well we have done or not so well in some cases. We use this day as a litmus test for what we want and make our plans for just how we plan on getting it. This year I make no resolutions. I normally don't make any so this New Years Eve will pass as the last 49 have. And each day I can just try to do right by those in my life.
For the past week I have known I was going to make a journal entry. I have been deciding what exactly I wanted to write. I knew I would talk about this past year, it's only natural that I would do that, but I also knew I don't like negative messages. However, this morning when Connor woke up with a 102 fever, I knew my plans would be changed for the day. And that in turn has changed the topic of today's journal entry. But not in the way you might think. I have a strong desire to write and say what I am so thankful for. But I also remind myself that while I know hundreds will read this, it is a journal for Connor so that he can see the pain and love that went into being the parent of a child with cancer. He can get a glimpse of the challenges that his mother and I have faced.
The past 12 months has been, by far, the most challenging year of my life. But the best part is, I am happy with the man staring back at me in the shaving mirror everyday so I would not change a thing. No need to go back and re-read that, I WOULD NOT CHANGE A THING! Cancer and all. My father always told me, "Son, if you can look in the shaving mirror and be happy with who is looking back, then it is a good day". Funny what sticks in the mind of a man as he thinks back on his childhood and the lessons his father taught him. Which ones stick and which ones we choose to forget or ignore. But that one has stuck. I have said it to my own 3 boys on many occasions.
As you read this, let here be no doubt, I am not happy that Connor has cancer. I am not happy that his 12 years of life have been mired down with 5 years of dealing with cancer treatments and chemotherapy. But I wouldn't change them because I love the young man he has become. I love that he inspires people to be better. I love that each day he wakes up and hugs me and tells me he loves me. I love his smile and the warmth of his heart that shines through. I love his genuine zeal for life. I love his laugh and how it can bring tears to my eyes while we laugh together.
This past year has pushed a 22 year marriage to its breaking point. But someone sent me a message one day that said "until you are broke, you don't know what you are made of". I was glad that each of those 22 years of marriage helped us to communicate and realize what each other needed to come out stronger on the other side. I found out that sugar coating the truth is never an acceptable answer. People who love you will love who you are, not who you want them to see. I can honestly say that the person writing this is a better man than he was 12 months ago. And I believe that cancer has contributed to the strength that my family has and has used it to help us get through the past 9 months since diagnosis.
With just 15 minutes to midnight and 2014, I write this from the quiet dark corner of a hospital room with my son just a few feet away sleeping quietly. Each year we have a tradition of a Silly String fight in the driveway. This year the family is separated by 37 miles so the Silly String fight will have to wait. After all, it's just Wednesday here at AFLAC. The floor was almost empty when we arrived, but the nurse told us they had 14 admissions of kids today after Connor was admitted.
The thought of 14 other families now spending New Years Eve here got me thinking. "Does it really matter that they are here?" To some I would say yes, but isn't life what we make of our circumstances? To be honest, I am a little sad that we won't have our Silly String fight tonight, but won't it be just as fun on Saturday when Connor is home? Of course it will be! I am just so thankful to be spending it with my son. I know that there are many that are thinking about us, the later it gets I am sure it will be more in their sub conscience. But we will be in peoples thoughts and prayers. So again, that makes me happy.
So as 2013 comes to an end and 2014 rolls in I can say that I love my wife, I love my boys and I look forward to the many more New Years Eves to come where we will not be separated by 37 miles or hospital walls. I am sure that the Silly String fight will be just as fun on Saturday, or whenever we get out of here. I can say that I am happy with the reflection I see in the shaving mirror. Can I improve? Sure, but can't we all?
And because I know he will want to know later on, when we checked into the hospital today, Connor weighed 98.34 and his height is 5'1 1/2". He has grown 3/4" in just 2 weeks time.

Monday, December 9, 2013 3:34 PM CST

Another day of infusion chemotherapy began at 5:30 this morning with the alarm waking me up out of some much needed sleep. Connor didn't get home from Raleigh until 10pm last night and by the time he showered, ate something and got into bed, it was near midnight. The night before sedation ritual is always about the same. Stay up too late so that you can eat right up until midnight and then pass out. They don't want him eating the morning of sedation so he pushes his limits the night before. That is probably one of the reasons I don't ever sleep well the night before. I stay up with him and then I am afraid I won't wake up on time.
The day got off to what sounded wonderful from the warmth of the house. The soft rain hitting the roof and making its way into the gutters. It always sounds so peaceful that you just want to stay in bed and sleep. But that warmth was soon shattered when the door opened to the frigid air outside. With the rain comes traffic, so Connor and I left at 6:30 for an 8:00am appointment to make sure we weren't late.
The first 30 minutes of our 50 minute trip was uneventful. And then we tried to get on Interstate 85. It was slowed to a crawl and every driver wanted to be in the fast lane. Luckily we had planned for this. We inched our way down towards the perimeter highway and finally arrived at Children's Hospital at Scottish Rite. We were 10 minutes early. As always, I dropped Connor at the front door while I went to park. He goes to the fourth floor and checks himself in and the wait begins.
About 8:15 they called us to the window to get his wrist band on. And then we wait some more. At 8:30 they finally called us back to the nurses area. One of Connor's favorite parts is the height and weight. Today he weighed in at 99.2lbs and 5' 3/4". At the rate he is going, he will need new goalie gear by next season! (Why can't someone who works at Bauer read this and give him a lifetime supply of goalie gear?). To put this in perspective, he was 89.4lbs and 5' tall on Oct 3. Just 2 months ago!
At 9:00am we were moved yet again into the sedation room. Ahhh progress. However, we weren't first on the list to be sedated so we had to wait yet again. By 1015 the doctor came in and the sedation along with his spinal tap began. I held his hand and told him I loved him as the propofol went in and in less than a minute, he was asleep.
I moved into the infusion area room to wait for Connor to come out of the sedation room. The wait is just 30 minutes or so but it can seem to take hours. I sit and read or meditate to pass the time. Anything to make the time go by a little faster. Today I downloaded some movies for him to watch so that he can fill his afternoon with things to do. Since today is an infusion day, there are 5 hours to kill while his chemotherapy works its way into his body.
They wheeled him into his room at 11:00 and I was waiting for him. He was still sound asleep and resting peacefully. The pace of the floor and the room itself was not fast enough to wake him. He slept through the next 35 minutes when the infusion process was ready to begin. He had to be woken up briefly to use the rest room, but when he was done, he was asleep before the infusion process began.
As I sit and watch him sleep, it is hard to imagine the little boy in front of me is the same boy that just 24 hours earlier was stopping pucks on the ice in Raleigh. He is a larger than life little boy when he plays hockey, and yet so small laying on this hospital bed. But in so many ways I am aware that he is at his best when the chips would seem to be down for so many. He elevates the mood of a room when he walks in. I love the relationship I have with my sons and the man they make me when I am with them. Connor really just seems to bring out the best in everyone around him. I know that every parent feels that way about their children, but I am so lucky to have him as my son.
As the hours press on, so does his treatment. He has had an hour of chemo, followed by a flush, and now another hour of treatment begins. This will be followed by another one hour flush and then home. All the while he sleeps. So peacefully he relaxes while the day goes by. Just another day he will most likely forget, but one that will be etched in my mind forever. Each of these appointments brings worry and concern that can't be measured. Any explanation I try to give will pale in comparison to the anguish that the parent of child with cancer feels when their child is going for treatment. It's a pain that I hope none of you reading this ever faces. But I also know that many of you that do read this have your own kids that are going through, or have gone through this. It's just not fair.
We are now into hour six of today's hospital visit. The infusion of chemotherapy is over and we now just need to get fluids for an hour. Connor is completely wiped out from this. The medicine that he takes for nausea is working but he still feels queasy like he may throw up. So far that hasn't been the case but time will tell.
Hour 7. The sedation, spinal tap, chemotherapy and fluids are finally over. After just over 7 hours we can drive home. The rain in Atlanta has been non stop today. It's cold and dreary out and the thought of getting back into bed sounds so good right now. But instead I will sit in traffic and make my way home. I can only hope that I am able to miss the beginning of rush hour.
Connor and I left the house at 630am today to get his chemo. The next 7 days are going to be made of of finishing this cycle of chemo. Some of which will be shots that get administered at home and of course , pills. Lots and lots of pills. At times he will feel like a pin cushion. But it will make him healthy. That is the one thing that keeps him and me going, if we do this, he will come out healthy. We have to believe that. If not, how could he even get out of bed everyday. How could I get out of bed? He is the one person I turn to when I think I am having a bad day and then I realize, I have no idea what a bad day really is compared to him.
But now he is home. He is resting comfortably and so am I. He hasn't gotten sick yet, but the bucket is at the ready. As am I, to take care of my son and do whatever it takes to make sure that his smile is there to light up the room. It's just one more day down in our new 3 year battle with cancer. Just 2 years and 4 months to go.

Thursday, October 3, 2013 11:46 AM CDT

All of us know what a "gasp" is. That moment where you are instantly scared and you suck in a large volume of air. The air remains in your lungs until the fear is gone and you can let out a sigh of relief. If all of you would indulge me, try it. For the next 30 seconds, close your eyes and suck in a large amount of air and hold it. Ready...GO!
Now that your eyes are open, imagine holding your collective breath from last Thursday until Tuesday of this week. That is the feeling that I had when Connor was told for the 3rd week in a row that his counts were too low and the sedation process and chemo could not happen again. That statement was not what bothered me the most. What bothered me the most when when the Head of Oncology, Connor's doctor, said that "No matter what, if his counts are bad next week, we will do a bone marrow check to make sure his cancer hasn't come back." That statement was said so matter of fact that I gasped and felt as though the air would never exhale from my lungs. The only good part of the news was that Connor was asleep at the time and he didn't hear the doctor tell me. There was no way I could share that with Connor. He has come so far and jumped so many hurdles, I didn't want to put another one in front of him. Even if I did tell him, there was nothing he could do to raise his numbers.
So after the news we drove home. I was numb to my day and to my surroundings. I went to breakfast with Connor and I tried to put on a front that no one could see. We did our normal things. We picked up his brother from school and went to hockey practice. The type of news we got is not the news you share over the phone so I had still not told Michelle. We'd not get home until 10:30pm on hockey nights so by the time we got home she was fast asleep.
The next morning came and went and I was still unable to share what Connor's doctor had said. Emotionally, this is a large weight to carry around alone. I had already told myself that this journal would not be hearing about it until after we got the word, one way or another. This is my emotional outlet. I think it, write it and forget it. All in the amount of time it takes to write this journal. But now we were pushing into day 2 of Michelle still not knowing. I had to let her know. And this is not easy to do. But we sat down and I explained what the doctor said. She and I broke down. Even though I had 2 days to process this information, I was still struggling with the fact that the cancer could return. Getting mad doesn't help, screaming doesn't either. The only option is to be strong for Connor. That is what we chose to do. And not telling Connor was also something we agreed upon. It served no purpose but to scare him. So we held back and allowed him to be a kid for the weekend without more added cancer stress.
On Tuesday morning, Connor woke with a severe headache. All of this was leading Michelle and I to believe that that cancer had in fact returned. But we would know soon enough. Tuesday's are count days. We were on our way to the local hospital to have the blood work done. Connor and I arrive by 8am so that we can still be in school by 9. The results are typically back by 2pm. On this particular day, those 5 hours would be an eternity to wait.
Two o'clock came and went with no results. Michelle texted me and told me that she had called at noon to find out if they were back, they weren't. It was now pushing 3pm and I was getting tired of waiting. So that is when I called, and still, no results. At 4pm, a nurse from AFLAC called and told me that there were no results and that she was leaving for the day at 4:30. If no results were back before then, we would have to wait till tomorrow. "Are you kidding me?" I asked her. "I know it takes 20 minutes to get these results, what is the hold up?" She told me she had no idea but that she would call again before she went home.
The delay in counts could only mean one thing. The cancer is back and they don't want us to know. They will come up with a plan on what to do next and that is when they will fill us in on what is going on. I could feel the hair on my head turning grey with the passing of each second. It was nerve racking. I was beside myself. There was no way I could go to sleep not knowing what was happening. And then it happened. At 4:25pm, as she has promised, my phone rang and the sweetest words ever spoken to me were uttered. "His counts look awesome! His white count is 2.1, his hemoglobin is 10.4, his platelets are 116,000 and most importantly, his ANC is 1400". My eyes welled up with tears. I could only muster a brief thank you and a soft goodbye. And then it came, my gasp was finally able to be exhaled. The sigh of relief was enormous. Connor looked at me in the rear view mirror and asked if everything was ok. I told him that it was "GREAT!" I let him know what his counts were and he smiled. And then we went on to our hockey practice.
The emotional ride that every parent of every cancer patient could never be fully realized by those that haven't walked a mile in our shoes. And truth be told, you don't ever want to. As parents we all fear that middle of the night phone call when they are off at college, but we don't get that. Our news comes face to face with a perfect stranger telling us that our child has cancer. And no one ever thinks it will be their child. No one ever does. I will steal a line that I saw online, "The day before my child was diagnosed with cancer, I wasn't a cancer parent either." It's a very real truth. No one believes it will ever be their child.
So on to some good news. Connor did great through his sedation and chemotherapy. He was also administered his flu shot while he was knocked out. That's one more needle he won't have to see or feel and I am sure he will be thankful. When he weighed in he also got more good news. Since last Thursday, just 7 days, he gained 4 pounds and grew 1/2 inch. He was very happy!
And finally, it's delivery day for Connor's Charity, Connor's Hope. He has a Connor's Hope page on Facebook for those interested in following. I know some people that read this journal wish there were more frequents updates, and that is the place to get them. And pictures from today's delivery and also his sedation can be found on the Facebook page.
After he finished his sedation and went to the recovery room, he delivered his "Bags of Hope" to each of the kids on the he Aflac cancer wing at Children's Hospital at Scottish Rite. It's just his way to let all of the kids know that no matter what life throws at you, you should never lose Hope. Always life life like you mean it. And when you have the occasional "GASP", just remember how great it feels to exhale.

Monday, September 23, 2013 7:51 AM CDT

Day 5 in this this place. Connor and I are well beyond frustrated and just pissed off. His ANC counts came back and they have once again grown by just 20 points. He now sits at 100 but he needs significant growth or an ANC of 500 to safely go home.
Feeling helpless doesn't sit well with me. I am a type A personality and I can be very demanding when I want something. When things are out of my control I struggle with how to manage them. Because I am well aware that this situation is managing me. I need to dig deep and find the strength to keep it together for my son. I need to find that same strength to keep my sanity.
Each day that passes in the hospital is worse than the next. The reason this stay is so much harder than those in the past is because to look at him, Connor looks fine. Every count, and I mean every count is where it should be. But his ANC is just not moving up. They don't want to send him home with a low ANC because he more likely to get sick. They tell us they need him away from illness yet they hold him in a building full of sick people! It's near impossible to convince a 12 year old that feels fine that he needs to stay another minute, never mind another day. But that's what I just did, I told my son he would be here until tomorrow. I have told him this each day for the past 5 days and each day he gets pissed, but ultimately we smile and move on. But I know that deep down this is eating at him.
On Friday, his doctor told him that since all of the other numbers were good, he was cleared to play hockey, go to school and resume all of his normal daily activities. So now, 3 days later, he is a little upset that this one number can't rise up like the rest.
So for all of you prayer warriors out there, I need your help today. Please pray that Connor's ANC count comes up and also that my patience is not tested any further than it already has been. We all hold on to our ropes, but I am getting to the end of mine.

Tuesday, September 17, 2013 5:35 PM CDT

I have used this line very often, "I am never afraid of hitting bottom because there is only one way to go after you hit. Strait up." And this is the case with cancer blood counts. This morning Connor and I made our trek to the local hospital to make a second attempt at getting his blood work done. Last week his ANC was only 180 and it needs to be at least 500. His platelets were also low at 18,000. They are better when they are closer to 50,000. Bt the ANC count was enough to delay last weeks chemo and sedation appointment to get a spinal tap done.
Today at 3pm my phone rang and it was Michelle telling me that his ANC was at ZERO and his platelets were at 9,000 and his hemoglobin was also low. Once again this means no chemo. However, since his counts are so so, it also means that he can't be around other people. So the nurse recommended we take him out of school immediately and no hockey.
This weekend is supposed to be Connor's first actual game since being diagnosed on March 23rd of this year. To say he is disappointed would be an understatement. He understands why, but that doesn't mean he has to like it.
On Thursday, we will go back to Children's Hospital of Atlanta and have his blood work done again. He will probably get a platelet transfusion and they will come up with a plan to raise the ANC levels back above 500. It's an outside chance, but a chance he could be at practice Thursday night and play in the game on Saturday. That's his plan. Hopefully Thursday brings good news and high counts.
So for now, I will continue to look up. No where else to go from here.

Thursday, August 29, 2013 6:02 PM CDT

Mundane mornings drive most people crazy. The monotony of daily life is something that most people just take for granted. As most people woke up today and had their coffee and got their kids ready for school, we were waking up and getting ready for another round of chemotherapy. The morning commute to the hospital without traffic is about 45 minutes. This morning it took us 90 minutes. I couldn't help but wonder how the people of Atlanta do this everyday.
The night before chemotherapy, at least for me, is restless at best. I just can't seem to relax my mind long enough to go to sleep. And when I finally do pass out from exhaustion, I find myself waking up constantly because I am afraid I will sleep through my internal alarm that wakes me up. The entire process can be exhausting on both body and mind.
The process today went as follows. Arrive at the hospital at 8am and go directly to the clinic. Once here, we have to do vitals along with height and weight. Connor has gained back most of the weight he lost. He weighed in at 94.38 pounds today. The big significant development for today was that he finally hit the 5' mark on height! He has been waiting for this for months to hit this height. The smile that was on his face when the nurse said, 5 feet exactly" was priceless.
Following the measurements, we went to sedation. They had informed us that today would be grueling before we even went back. We entered room and the controlled chaos began. Nurses poking an prodding and doctors going in and out of the sedation room. Finally the anesthesiologist comes in and administers the doses of propofol and fentanyl that put him to sleep while the procedures begin. As I always do, just before he falls asleep, I lean down and tell him I love him. Once he is out, I let go of his hand and leave the room. A short 15 minutes later they are wheeling him into recovery where I am patiently waiting for him. He comes out of his sleep and then the real fun begins.
His nurse came in and explained that we would be getting 3 different rounds of chemo today. Each drug was part of Connor's regimen the first time around but the doses are much higher this time. She warned that he could feel nauseous and gave him some kytril to calm his stomach. She hooked him up and the 3 hours of waiting for chemo to work it's way through his veins began.
The process isn't painful. It's more boring than anything. We sit and talk or just hang out together. It's honestly time that I would never trade. No topics are off limits and believe me, I mean no topics. How many parents get this opportunity. I count myself as very blessed to have this relationship with all of my sons.
As the 3 hours came to an end, the nurse came in and talked to me about the upcoming week. Connor will get sub-cutaneous shots of ARA-C in his thighs every day at home. These shots will be administered by yours truly. No medical degree necessary. He will also be starting a brand new drug this week and he will take that drug until next Thursday when I will take him back to Children's Hospital of Atlanta and do the exact same chemo treatment again. No spinal tap or bone marrow but the 3 hours of fluids and chemo will be repeated.
When we got in the car to drive home, Connor asked if he could still go to hockey practice. I told him that we could as long as he was feeling up to it. Before we hit the highway, he was asleep. We drove in silence and I just watched my boy rest. There was no traffic but that wouldn't have mattered. The ride was a joy because my son was happy and resting next to me.
Once home, he woke up and went in his room to lay down to sleep some more. At 5pm he came out and packed his goalie bag and started to load the truck. His mind wanted to get in the truck and drive to the rink, but his body looked like it needed the rest. I told him I wanted him to stay home and to take his bag back to the garage. He wanted to protest but deep down I think he knew I was right.
So tomorrow the monotony begins again. We wake up, we eat our breakfast and I drive my son to school as I do everyday. It is no more or less boring than anyone else's morning that is reading this. But I can tell you this, I wouldn't trade my monotony for anything in the world.

Wednesday, July 31, 2013 11:42 PM CDT

The word "retreat" has several meanings. As a retired Marine, it means something Marines don't like to do. But when necessary, we will. One definition of "retreat" is to "break from battle, to regroup". That definition is the one I am focusing on in part tonight.
A week ago Friday, Connor got out of the hospital. His only request was, "can we please go to a beach. Any beach". There is just no way to say no to that. Of the past 131 days, Connor has spent over 90 of them in a hospital room. Just 2 weeks ago, I believed that my son would go home. Not home to me, but to God. I truly thought that his mission on this earth was done and that it would be our job to carry on his legacy and his hope. My knees definitely became weak, but they did not buckle. It was time to retreat. I needed to regroup to be able to support not just one of my sons, but all of them.
I have had so many wonderful compliments about my writing. Or what a great dad I am for being there for my son. Is awkward to hear. But only because this is the only way I know how to be a dad. I learned from the best dad. So anyone that could tell me they would act differently, I just can't understand or believe it. And while I appreciate all of the accolades for my parental duties, I am really only trying to impress 3 people. My sons. At the end of the day if they say I am awesome, then I can rest well.
Most of the people that know me do not know me to be an emotional guy. That's why when they read this, they have to question, "are you sure this is really you writing this?" That one always makes me smile. I do not wear my heart on my sleeve. I am a child of the 60's and 70's and we did not cry. We did not show emotion. How many of you can relate to the phrase, " you want something to cry about? I'll give you something to cry about!" This phrase was typically followed by a "SMACK", somewhere in the upper head region. I am only reminiscing on here because the stories of my youth are some of the stories I shared with Connor during our 3 months at Children's Hospital. We laughed at many of the stories, while others he just had a very shocked look on his face. Fun times. And we had many of them at the hospital. We always found a bright side.
We have talked about being positive and the bright side a lot lately. As the summer winds down and the kids get ready to go back to school, we seem to go there even more. This had clearly not been the greatest summer. Its certainly not how your average 12 year old - or his 40 something year old parents for that matter, want to spend a summer.
Instead of relaxing at the pool we were switching off nights at the hospital and worrying about blood counts, oxygen levels, and infections. Instead of spending time at the beach or going to Six Flags, or the lake, we were watching our son get injections, CT scans and take pills. And while all of this was going on, we were able to look for, and find some positives.
What could possibly be positive about having a child with cancer and spending the majority of the summer in the hospital ? Well, on the surface, nothing. But deeper down, we thought of lots of positives...some serious and some silly, but positive nonetheless.
Did you know that the USA network shows Law & Order, CSI, and Criminal Minds all day? If my day job doesn't work out, I have learned to solve the most complicated crimes in less than an hour. Also, we watched a very informative Big Foot marathon. I am now a schooled in all things Big Foot related. There is also a show called "American Hooker" and contrary to what you are thinking, this is a show about fishing...although Connor did enjoy my reaction. When I said "you're watching what?"
Connor has learned that he is his own advocate when it comes to his body and his care. It's ok to tell the nurse to stop doing something that hurts, to ask questions and to have a say in his treatment.
We have talked about the fact that this summer wasn't the best, but he will have so many more in his future. We always knew that Connor had a great personality and incredible sense of humor. As parents we learned that his personality and sarcasm mirrors ours, and that was a proud, and frightening moment.
A positive for us was the sheer amount of time that we got to spend with our boy. Not many parents spend that many continuous hours with their children. Even in the hospital, we would joke and have fun. We made the best if it, and that was all we could do. The time we had at home with Sean and Declan was also special. They knew that their brother needed us more, and they understood. A big job for a 13 and 6 year old. But they stepped up, and fortunately or unfortunately everyone grew up a little more than expected this summer.
Connor is experiencing this payback. He has people praying for him from Alaska to Australia to England, and everywhere in between. But we needed to retreat. We needed to step back from this battle. We needed to relax with no outside contact. Just salt air, sand between our toes and a chair just on the edge of the waves. The retreat is over and the battle begins again at 2pm today. Connor goes to the hospital to have another CT scan of his lungs. They need to find out of he really had the fungal pneumonia they thought he had 2 weeks ago. Hopefully not, but if the worst happens, I think there are still a few episodes of Law and Order I have missed. But no matter what, the positive side of that, I will get to be by my sons side through it all.

Friday, July 19, 2013 12:03 AM CDT

We are back at Aflac today for another sedation appointment so Connor can get a spinal tap and his chemotherapy of Vinchristine. Before all of this can happen, he has to get his weight and height. Connor gained 2 lbs from the 20 he lost while in the hospital. Apparently being fed through an IV for 2 weeks can really make the weight fall off. Unfortunately the muscle tone goes with it. His weight was up to 84lbs and he is still holding at 4' 11 3/4 " tall.
They accessed Connors port to take blood to check counts. The anesthesiologist came in to go over the 2 sedation medications , versed and propofol- both fast acting but not long lasting sedation meds. Connor was only sedated for 10 minutes while they took a sample of spinal fluid to ensure there are no cancer cells in the spinal fluid.
Once he was awake, he got a dose of vincristine, which is a chemo drug that is administered through his port over 5 minutes.
We also got the "roadmap" of Connors treatments for the next 3 weeks. He has a few new chemo medications that he will start taking during this phase. He will start a five day cycle of steroids today which should help him gain some weight. We have him on a high protein, low fat diet to help him gain weight but also to regain some muscle mass.
He will have a CT scan in a few weeks to check how his lung infection has cleared up and best of all his next office appoinent is not until August 8!
So for the next week or so we will enjoy our family time and begin the process of going back to school. Yes school, the kids are back on August 7th. And before all of you from the North start to say, "Really? You go back so early! Summer isn't even over yet". Keep in mind, school ends the first week of May for us.
Sometimes I talk about our new normal. I'm pretty sure this is just what our normal is supposed to be. This is our path, and we are making the best of it. We have great family and friends and a tremendous support system. We are blessed beyond measure. So while this is certainly not the path we would have chosen, it has been chosen for us. We just have to have faith that there is a reason. I know God has a greater plan for Connor, and maybe for our entire family. When your child is diagnosed with cancer it changes you forever. When your child is diagnosed with a relapse, it changes you again. I know these changes are not what we, or anyone would ask for. Change is scary, but change can also be good. It is through change that we all learn and grow . We have learned to be patient, hug a lot, always say I love you, pay it forward when you can, be kind, slow down, take things one day at a time, and not sweat the small stuff. And at the end of the day, it's all small stuff. Good lessons to learn matter what your "normal " is.

Sunday, July 14, 2013 6:37 PM CDT

If you have ever gone on extended vacation then you know this statement is true. There's nothing like coming home to your own bed. The smell of your own sheets, the pillow on your head as you lay your head down, just can't be compared to any other bed. Tonight I am happy to say everyone, and I mean everyone, will have their head on their own pillow in this house.
Today when I arrived at the hospital I knew that I was going to have a conversation with his doctors about getting him out. It just seemed to me that he did not need to be there for another day. All of the drugs that they had given him have been moved to an oral drug and away from his IV. As far as I was concerned those drugs could all be administered at home.
So today we start anew. We start living our summer. Of the past 14 weeks, Connor has spent 10 of them in the hospital. That's just too long. I do realize that he seems to deal with it okay, but deep down I know that he misses being outside. He misses playing with his friends. He misses hockey. He just misses living outside of a hospital bed.
Next week we will go on vacation. A family reunion of sorts where we will see all of my brothers and sisters. Most of my nieces and nephews will be there too. It will be a great celebration. Not just a celebration for Connor but a celebration of living. A celebration of fighting through even the toughest times. I wish all of you that read this post could be there with us. I know we have a long way to go but I also know that there's a lot of fights left in all of us.
This week Connor will stay at home. On Friday he goes back to the hospital to have another round of chemotherapy, another spinal tap and another bone marrow aspiration. But even with all that coming up, I am not worried. I know that tonight I will be able to walk down the hallway of my house and peak in on all three of my sleeping boys. Tonight I will rest easy. Tonight, all of our traveling is over and we can all be comforted in knowing that our heads will lay on our own pillows.

Thursday, July 11, 2013 10:18 AM CDT

The hardest part for any parent with a child in the hospital is the waiting. Waiting for the doctors to come in and give you good news. Waiting for a test to be done. Waiting for the results of that test to be read. Waiting to hear any positive news. The list of things to wait for seems endless. As a father, it makes me feel helpless. Almost like I can't protect my own son. I realized this fact a long time ago. It's a tough pill to swallow. But I had to accept that fact. This is just bigger than me.
For the past few days Connor had struggled with his body's inability to overcome the pain medicine he was given to help him get over his lung infection. The tubes down his throat and up his nose broke my heart to look at. The number of IV's he ripped out of his body while thrashing around was too many to count. They told us he wouldn't remember any of it because of the drugs. They were not 100% accurate in their statement. Truth be told he does remember some things, but thankfully not all.
At 2:00am this morning, Connor broke free of the chemical bind that held him so tight. He was alert and got out of bed for the first time since last Saturday and walked to the bathroom. With some assistance he was able to stand and to help us to maneuver him around his hospital bed. He was smiling and joking and back to his happy self. It was a joyous moment indeed.
One of his first comments was, "when can I get out of here?" I think this is universal for people that are getting better during a hospital stay. I explained to Connor that he would have to get his strength back and be able to walk, unassisted, and show that his strength and stamina is back. He said he completely understood. So his next question was, "when do I go back to the Aflac wing?" That is the cancer wing on the 1st floor of the hospital where we started our latest hospital journey. Like an idiot, I GUARANTEED him that it would be today. I know I shouldn't have done that. But I also know that his emotional state is just as important as his physical state and he needed to hear some positive news.
At 10:00am today the nurse came in and made my words prophetic. She told us that they were working on the transfer order to get Connor back downstairs to Aflac. I just shared that information with Connor and he smiled. That smile made my day. It's a great thing to know that your child is happy. But in a situation like this it takes on a whole new meaning.
On Saturday I wrote a note to Connor and told him that I was scared. I wrote that I would be there when he woke up and that I would read that letter to him. Being a man of my word, I just finished reading that to him. His reaction was the same as mine. He cried. He told me how happy he was and that he knows that I love him. He also said I do show him enough. But is that even possible? I don't think it is ever possible to show you children too much unconditional love. I plead guilty to trying to show my kids how to grow up while knowing that their dad loves them. If the worst outcome is that they complain to their friends that their dad smothered them with love, then I will consider it a success. Or worse yet, they share that unconditional love with their own kids. I should be so lucky.
So we wait. We are sitting in his hospital room of the PICU and counting the seconds until they wheel him out of here. He is looking forward to the trip. He said that he can't wait to "get more than and hour of sleep at a time without being woken up." As he said that he smiled. He's back baby, he's back!

Wednesday, July 10, 2013 12:00 AM CDT

Have you ever seen someone go through drug withdrawals? It's not pretty. And when it's your twelve year old son, it's pretty horrifying. They are giving Connor methadone to help wean him off all of the heavy sedation medication he was on. The doctor told us to expect withdrawals, and what to expect- pain, sweating, major discomfort, vomiting, shaking, etc. While I was expecting all of this, I still felt helpless. There is nothing worse than being unable to comfort your child. Connor was in so much discomfort last night and it took a long time to settle him down. His main concern was severe pain in one knee. We tried sitting him up, putting pillows under his legs, ice packs, heat packs. All of which worked for about 30 seconds at a time, then we tried something else, on and off for a hour and a half. A few times, I thought he was going to drop the "F" bomb, which would have been ok with me at that point - whatever was going to make him feel better. Each time he yelled, "fudge" and immediately after said "sorry". Even during all of pain, he felt the need to apologize - you have to love him! After three different medications he was was calm and he finally fell asleep at about 2am, which made for a very long day. Par for the course for this very long week.
They have Connor on a consistent schedule of three different things to wean him off and help him rest. He was up for a few hours this morning, but has been sleeping now for the past three hours. He is still on oxygen, but they have been lowering it to make sure he can breathe without that constant support. the doctors say that his chest X-ray looks good and his lungs sound clear. Now, we need him to get through these withdrawals and get him some much needed rest.
When you go to a hospital, it is get well, it is certainly not to sleep. I joked two days ago and said that the nurses were having some training in the PICU that night. The topics included talking loudly, slamming doors, emptying trash at 3am, and my favorite, how to find the loudest thing to drop right outside our door. You jut have to find some humor, and move on. It's not easy to find humor sometimes, but we do. We have to.
So, we are moving ahead. Looking forward to getting back to the Aflac floor with Connors favorite nurses either today or tomorrow. The day we get back to Aflac is one day closer to going home. We just keep looking for those positives. We have lots to be positive about and be thankful for.

Monday, July 8, 2013 1:27 PM CDT

This is Connors third day in the pediatric intensive care unit of Scottish rite. It is a very different world up here. We were terrified as we walked down the hall and saw the PICU sign. They left us at the door while they got him settled. There is not a more helpless feeling than turning your child over to doctors and nurses and the "unknown". After the initial shock of seeing our child hooked up to machines that breathe for him, tubes down his throat and nose, and wires connected to his chest, things settled down for the night. Saturday and Sunday were mostly quiet, lots of activity with doctors and nurses coming and going. The doctors were saying that he needed to rest and their main focus a was to reduce the fluid in his lungs and the fungal infection was a secondary concern. They are giving him several medications and antibiotics to cover the infection. His counts have hit bottom and have been there for several days. His ANC (your body's ability to fight infection) have been zero, and his white count (cells that fight the infection) have also been zero. Connor was stable and resting, and all we a could do was be here's by his side.
This morning the ICU doctor came in be said that his counts had jumped since yesterday. His ANC was now at 415 and his whites count was 630. This is outstanding! This means that his body is starting to recover. The doctor said that they plan to remove the respiratory tube tomorrow (Wed at the latest) and monitor for 24 hours. He will then head back to a room at Aflac while he continues to recover enough to go home. With him in the PICU it's hard to remember that we are actually here to recover from his last round of chemotherapy.
The pulmanogist says that his lungs look a lot better and that he and the infectious disease doctor do not think it was a fungal infection, but some other kind of infection. This infection would have been treated with the same antibiotics either way. The only way to truly figure out if it is a fungal infection would be to do a lung biopsy. The doctors say Connor is still to sick to do that.
So, lots to be thankful for today. His counts are up, they may take the tube out tomorrow, he has not had a fever in a few days, and his lungs have improved . There have been a few times that he has woken up and actually even sat up in the bed. This is one of the most frightening things I have ever seen. It's only scary because he is in a deep sedation and not supposed to wake up. So this kind of scared the hell out of me.
We should know a lot more information tomorrow. He continues to improve and we need to keep that trend going tomorrow.

Saturday, July 6, 2013 8:35 AM CDT

Most of the time I write this journal to those who take the time to read it. But I am also writing this to Connor. One day he will open this book and read it and realize all of the love that has been poured out to him by people who love him and by people who have never met him but have grown to love him anyway. But today, I write directly to my son. I will read this to him when he wakes up from the ICU.
You have me scared today. I don't admit this often, but I am. So many days I place the weight of the world on my shoulders for you. But today I am weak in the knees. The weight that is bearing down on me is becoming unbearable.
Before you were intubated last night I leaned in to kiss you and tell you that I love you. You looked at me and with tears in your eyes you whispered, "I'm scared dad". This is the second time you have faced this disease in your 12 years. I have never heard you say that.
What you don't understand son is that my strength comes from you. I watch you as a man among boys. You are the epitome of who I wanted to be when I grew up and I am so proud of you. I know that there has not been a day in your life where I have not told you that I love you. Even when I would travel around the world I would call you. Every night at 7pm the house phone would ring. It gave me something to look forward to when I was away. All of my boys provided me with the strength to make it through another day. While I have told you that I love you, I only hope that I show you enough.
My knees may be weak, but they will not buckle. Today I will use you as my inspiration to be strong. Today I will fight your fight for you. I will be by your side and not leave. When you finally wake up, I will be there. Never doubt that. The times we face right now are the most challenging we will ever face. I know that it is just you in that bed. But I say "we face" because because we are all fighting for you.
You told me that you are afraid. Truth be told, I am too. But I am only afraid of you not knowing how much you are loved. I have had 12 years to tell you. I will make sure that the rest of my life is spent showing you. Thank you for being my strength. Thank you for being my rock. Thank you for being my inspiration today and everyday. I love you Connor. I am so proud to be your dad.

Tuesday, July 2, 2013 2:31 PM CDT

Sometimes I wake up and have to ask myself, "Was all of this bad news a dream. Does Connor really have cancer"? That was how I woke up today at 3am. I was asking myself if he was really struggling to breathe, or in so much pain. Surely I could do something to help if he was. These wake up calls are frequent and frustrating. My answers are just never good enough and I wake up to the reality that is the life of a parent of a child with cancer.
We were told that this phase would be the hardest phase to go through. But no one can prepare me to see what I am seeing. Yesterday, after starting out with some great news that this will be Connor's last hospital stay, we were abruptly given the reality that life can change in a moments notice. He was diagnosed with pancreatitis and his pain started. They took him off all foods and he began being fed through an intravenous line. The last meal he had was Saturday night. The pain was so intense that they started him on morphine every 4 hours. When that wasn't enough to stop his pain they put him on a pain pump. This pump is a self administered pump that will give a dose of morphine as frequently as every 15 minutes. Since there was so much stomach pain he was vomiting. But with no food, he was vomiting water. Until there was no water left and then the dry heaves came.
When the pain got so intense, his breathing became labored. This worried the doctors so a chest x-ray was ordered. It was determined that his pain was so intense that he didn't want to take a deep breath because it hurt to much. He whimpered through the chest X-ray due to the pain. The chest X-ray came back and showed fluid on his lungs which also added to his pain.
Then he started having breathing issues. He was taken for an ultrasound to make sure his pancreas wasn't bleeding. It wasn't bleeding but he whimpered and cried through the process because it hurt so bad. The pain got so bad that he vomited on the way back to the room.
Since his last meal was 2 days earlier, they started an IV and began giving him nutrients through that. Even though he is getting nutrients, the hunger pangs are frustrating him. He can have water only. No solid foods to keep the pancreas from having to work. Normal levels for a pancreas lipase levels are 60, Connor's skyrocketed to almost 6000. His pancreas swelled up and the pain is wrapping around his back.
If all of that wasn't enough, he finished his day by running a 101.5 fever. The cause of this was unknown but they started him on 3 different antibiotics to ensure he could break it, which he finally did last night. The fever has been off and on all day today.
With all of this going on it is also affecting his blood pressure. While it remains at acceptable levels, they check it so frequently it feels like he never gets to sleep or just rest. They are worried that his blood pressure is falling too low because he is getting numbness in his legs and his feet are cold. This is a sign of poor circulation. If this doesn't improve with meds, he will have to go to the ICU to continue monitoring him. Currently this doesn't look like it will happen, but it is a possibility.
So as I finish writing this I have to reach and pinch myself. As it turns out, I am awake. Wide awake. This nightmare I had hoped I could just wake up from is the reality of real life, not a dream. The good news is, all of you. The support and love from family, friends, and complete strangers that are affected by Connor and his story is part of the process of recovery.
When I think about a bad day, I just have to take the advice I give my son. Put your head down and face the day head on. Burying your head in the sand and hoping it goes away doesn't work. Head on is the only way to approach it. And if it overwhelms you at the end of the day, go to bed. Tomorrow is another day. And when you feel like you have hit bottom then the only way to go is up.

Sunday, June 30, 2013 7:29 AM CDT

The highs and lows of a cancer diagnosis are well documented. I have been writing about them for years on here but Connor's story isn't unique by any stretch of the imagination. It is only unique to him and to those that love him and are touched by him on a daily basis.
"Milestones" has been the word I have chosen over the past 8 years to describe positive events such as, the "one year mark" or "halfway point" etc. These events are truly remarkable because they help to mark the passage of time and movement into the future. A future without cancer.
When Connor was first diagnosed, we were told that each chemo treatment would be done on an inpatient basis. The reasoning behind this was the fact that the chemotherapy he was getting would, at times, be 1000 times more than he had ever received in the past. The thought of this sent waves of emotion through my body. It was just too hard to fathom the amount of poison that would be pumped into his body to cure this disease. There were so many questions. Would this hurt any other organs? Would he still be able to have kids? What are the long term effects on him? Will it effect his brain or his ability to learn? Will he die? That last one is one that no one wants to think about. But it's real. It weighs on my mind on a daily basis. No amount of reassurance can ever ease that thought.
When my kids were born I can remember thinking about what I was told by my brothers and sisters. Since I am the baby of 7 siblings I had a plethora of advice and what I would have to go through while raising them. My brothers and sisters worst fear was worrying about their kids or if they would make it home safe at the end of the night. The dreaded middle of the night phone call from the local police department. I guess when the day comes I will worry about that too. But my bad news came in person the days, (yes plural) that we were told Connor had cancer. These dates and times of day and the feelings that I had are etched in stone in my head. I don't think about these moments daily, but when they come into my head, it is like a wave of emotion crashing on the shore. It hits so hard it knocks everything out of its way. It is an immovable force of energy that can stop everything else in its path.
The brightest day over the past 8 years, next to the birth of my youngest son, is definitely Valentines Day 2008. The words "this is your sons last chemo appointment" were told to me by his doctor. I remember crying tears of joy that day. A similar thing happened to me the other day when Connor called me on the phone and said, "Dad, I have great news! I don't have to have anymore hospital stays to do my chemo!" No only was this great news, but to have it delivered to me by my son made it even more special. I could hear the excitement in his voice and I could tell this was a milestone he was happy to share with me.
On Friday, after I had left for the day and Michelle took her turn at the hospital, the doctor came into Connor's room. He had in his hands the protocol map for the next 2 years of treatment. As part of this protocol, there are NO MORE planned hospital stays and he will no longer have to receive chemo on an inpatient basis. He will continue to have office visits, clinic visits and he will continue to receive chemo. But all of this will happen as an outpatient. The only way he would need to be hospitalized would be in case of fever. Anything over 101 and he is at the hospital, anything at 102 he gets admitted.
Connor's treatment will follow a British protocol that has shown the greatest indicator of success to be the first months results. At the end of Connor's first month, he was MRD negative which meant zero �ancer cells remaining. And you can't get better than zero.
So while his journey will still continue, it will continue at home. I absolutely love this hospital. They continue to take amazing care of my son. But as any parent will attest, you sleep better when your kids are home and in their own bed. When you can walk down the hall or down the stairs and take a peek and know they are right there, safe. Now that is a reason to celebrate.
UPDATE: Seconds, not minutes can change a mood. Connor has been experiencing some pain and he was just diagnosed with pancreatitis. This is caused by one of the chemotherapy drugs.
He now has to be fed through IV for the next 24 hours. They need the swelling of his pancreas to come down. They are also going to give him morphine for pain. He is scheduled for a ultrasound of his pancreas today to make sure he has no internal bleeding.
I know I just wrote about him not having to come back to the hospital. Now I am just hoping he gets to leave.

Thursday, June 27, 2013 6:58 PM CDT

Have you ever had chapped lips? I mean the really bad kind. The kind that hurt when you smile because you can feel the lip split. The kind where no amount of Chapstick seems to work. That is what Connor has today. His lips are so chapped that he is actually bleeding down his chin. He also has sores inside his mouth that are also incredibly painful. His gums have also started to bleed today and are red and swollen. All of this is caused by the chemotherapy. I wrote how the cure can be worse than the disease and this is one of those times.
The side effects from chemotherapy are far reaching. It's not just the loss of hair or the lethargy that Connor must fight. He must battle the aches and pains of this entire process on a daily basis. How this boy manages a smile, I sometimes have to wonder. He makes lemonade out of the lemons he has more than anyone I have ever met.
Tonight at 8:30, Connor will start a platelet transfusion. This is to combat the bleeding and sores in his mouth. The hope is to raise his platelet count high enough to help his blood clot so his bleeding stops. A platelet transfusion lasts for about 3 to 4 hours so sleep will not be on the agenda tonight. At least not for a while. Even when he doses off, it will be my job to watch him. I love to watch him sleep because he is at peace. Nothing seems to bother him. His heavy breath is music to my ears.
Since Connor is "count dependent" he can't leave the hospital until his counts have a steady rise over multiple days. When the doctor came in today I asked if there were any certain levels he needed to be at. I was told there are not. Just looking for a steady rise. I also asked what was the fastest anyone had gotten out of the hospital after this treatment and I was told, they don't look at that.
I am aware that they don't want to get our hopes up or down, but we need a goal! Connor wants to be out by July 4th. I told him that I don't think that will happen but he wants to be home. My hope is that he doesn't want this so bad that he feels horrible if he is still in. Today is only day 7 on what the doctors said could be a 30 day stay. Managing his expectations and my own is a very difficult task. Even I believe Connor when he says he will be out.
After the platelet transfusion tonight they will draw blood and look at his counts again. The other day his counts had come up slightly but they are telling us that they expect them to bottom out even more. At this point it is a waiting game.
Another challenge that Connor was faced with. Yesterday was being told he needed to wear a mask outside of his room. The mask is designed to keep him free from the germs that may be in the hospital. Most people don't think about coming to visit their loved ones if they are sick. But for a cancer patient, your cold can be their ICU visit. So he has to abide by the rules. The problem is, Connor has been exercising daily. His exercise has included running up and down flights of stairs. You know, typical for a cancer patient. However the mask makes it hard to breathe so he doesn't want to do anything that pushes him. So for now, we just walk for an hour or so or go and sit outside in the garden.
One of the perks that Connor has been enjoying is his daily massage. As I sit and write this, he is in the process of getting one. It makes me very jealous. It probably makes most of the people on this floor jealous, including his nurses. But it makes him feel great and does soothe his aching body. The massage therapists from Massage Envy Mall of GA are truly amazing. They are doing this for no cost and on their off time. They are being so selfless and I am proud to work with all of them.
So as I wrap this up I will ask that all of you pray for more good counts tomorrow. I need his lips to heal and his sores to subside. I would like to make my sons wish of coming home next week a reality. I know that all of you have tremendous faith. I also have faith that we can shorten this month into a couple of weeks. The thought of 3 more weeks in here is just too much to fathom right now. I need to take my own advice....one bite at a time.

Monday, June 24, 2013 5:32 AM CDT

The elephant in the room is always how long this is going to take to be over. Three months passes in the blink of an eye in your life. Can you remember exactly where you were on March 24th? I can. I know exactly where I was and exactly what I was doing. I was laying on a bed in a hospital room just 3 doors down from the current hospital bed I am lying in tonight. It's funny how just 3 months and 2 days ago how much I took for granted.
Taking what we have for granted is easy when you think you have it all figured out. You can look at your life and see the path you are on or you can see the road you want to take. Then in the blink of an eye it all changes. Summer vacation plans are put on hold. Days on the lake are interrupted. Rounds of golf that won't take place. Just a simple walk around the block can no longer be accomplished without prior planning on if or when you will be at the hospital.
The days of feeling sorry for myself on this new road I am on are past. At least most days I feel they are. I try with all my heart to be strong. To be honest, some days are easy. But some are hard. Very hard. Friday was one of those days.
On Friday, we headed back for our planned hospital stay. The day was going great. Connor did hockey camp until 2pm and we rushed down the highway to be at his 2:30pm check in for admission. Michelle would stay with the other boys at the camp until it finished at 3pm and then meet me at the hospital to get Connor settled in his new room for the next month.
After some gentle prodding by Sean, he went with his friend to spend the night on their boat on the lake. We felt as though this would be great for him to just have time away from the hospital and be with his friends. My plan was to meet them up at the lake with Declan the following day to hang out and then to retrieve Sean and come home. Simple enough.
After finally getting Connor into a room at about 5:30 and preparing the room a bit, I got a call on my cellphone. It was another hockey parent calling about the following day at the lake. I took the call an spent about 3 or 4 minutes going over details of the next days events. I did this in Connor's room and about 3 feet away from him never realizing at the time what I was doing. In short, I was showing my son that life goes on without him outside these 4 walls when he isn't around. It was incredibly insensitive of me.
When the call ended my son was in tears. He was upset that he would be missing a day on the lake with his friends. There was no consoling him on this. No amount of, "we will go as soon as you get out" that was going to pull out the knife he felt I put in his back. It was painful for me. I wrapped my son up in my arms and had a good cry. But I did explain to him that I won't punish his brothers because he was in the hospital. I told him that if I could change places with him I would do it in a second so that he would never have to go through this again. I told him I thought Sean would do the same for him and how his big brother, the one he fights with and complains about, would take this pain away in a heartbeat if he could. I told him that if anyone were to mess with him at school, Sean would surely step in and deliver the required beating. But this foe was just to big for him to tackle alone. For this fight, he needs an army. And his family is the army he fights with on a daily basis. But every army needs to take time to recharge their batteries. Our time at the lake without him is as much about recharging our batteries as it is about spending time with friends.
After 20 minutes or so. He said, " I love you Dad" and I knew he got it. He had a brief, "I need to feel sorry for myself" moment but it passed. I have told him that these moments will continue to come for the foreseeable future and they are perfectly acceptable to have. It's remarkable to me how much he understands. He just gets it.
This weekends treatments went amazingly well. I told the doctor how the one anti nausea medicine didn't stop him from throwing up daily so he changed the medicine from Zofran to Kytril and he hasn't thrown up once since Friday. At the 42nd hour when they gave him the needle in his thigh, he barely winced. When he was done with the chemo he took a shower and we went for a walk....for an hour. We went around the hospital and then found 2 flights of stairs that he said he wanted to start running on a daily basis to help build his strength. We also were told by the doctor to massage his legs and arms daily to help regenerate cell growth so my wonderful employees at Massage Envy Mall of Georgia were here in 3 hours to start his daily massage regimen. He is looking forward to getting his 3pm massage today. He is bound and determined to leave this hospital in 2 weeks and I would not bet against this kid.
So 12 weeks down and another 120 or so weeks to go. Seems daunting when you look at it that way. How in the world can I look ahead 120 weeks? How can I look at missed vacations, or lost mountain bike riding, or missed rounds of golf and not have my heart break? Easy. My son is alive, he is a fighter. He has the tenacity of the honey badger and the heart of a lion. But he also has the soul of an angel. And that combination allows me to look at my son and cherish the time I get just laughing together in his hospital room. It allows me to be comforted knowing that days on the lake, vacations to the beach or rounds of golf may be on hold this year, but I will have more opportunities in the future to do these things with all 3 of my sons together. And no matter how big the elephant in the room is, you still eat him the same way.......one bite at a time.

Friday, June 21, 2013 3:37 PM CDT

The hardest part of taking Connor to the hospital has to be the morning he goes in. As we woke up today and prepared for our day, I was just looking at him and thinking to myself that he looks so healthy. Besides the bald head, he looks like he always has. Young, vibrant and happy. It's a false sense of security because I know that he is still a cancer patient and he will continue his next round of chemotherapy in just a few hours.
This week has been so wonderful for Connor. Together with both Sean and Declan, Connor has been at a hockey camp. Each day started out with him waking up, getting dressed, vomiting for 10 minutes, taking a shower and then leaving for camp. And each day I would tell him, "Connor, you don't have to go if you don't want to." And he would always respond, "No dad, I want to go." Once again I try to put myself in his shoes and think, what would I do if my day started out by vomiting? I know the answer. I would turn right back around and go to bed. But not Connor, he pulls himself up by his bootstraps and goes to an 8 hour hockey camp! These camps are always grueling. They had 4 hours of ice time a day along with an hour of off ice sessions and chalk talk. They got an hour for lunch. Most parents would never notice this, but since Connor goes to the doctor every week, we saw an 8 pound weight loss on him since Sunday. He weighed in today at 91 lbs and 4'11 3/4" tall.
Some people may look and think to themselves, "I would never let my child play if he/she had cancer. But I promise you, the game of hockey is as much of a drug to cure him as vincristine. I wrote the man who runs the camps and told him that this week is part of Connors cure and they he can now put "curing cancer" down on his résumé. Because as much as Connor threw up, as much as he was hurting, as tired as he got, he always had a smile on his face this week. Hockey was just what the doctor ordered.
We just got to the hospital for the 2nd round of chemo in the last 7 days. The week of putting cancer behind us is over. It has moved to the forefront of our lives again and will remain there until he gets to leave the hospital. Since the chemo is the same as it was last weekend, we are sure that his counts will drop and they will take some time to recover. The doctors say a month, Connor says 2 weeks. I guess we will have to see who wins that fight.
They plan is to start chemo today before 6pm. The process takes 3 hours to complete and this will make him start to vomit again. Sleep will be at a premium now since I know I will be vigilant by his side while the process is taking place. And even when it's done, I won't be able to sleep to make sure I am there when he wakes up. The chemo will happen every 12 hours for 3 hours and the vomiting can take place from 3 to 5 hours after the chemo ends. At hour 42, Connor will be held down and have 2 large needles stuck into his thighs. Its painful, but he has been down this road before. He understands that this is part of the treatment, but in this case the cure can be worse than the disease.
Michelle and I will alternate nights at the hospital until he is home and try to run the house. At the end of the day we need to make sure that Sean and Declan are happy and that cancer has little to no impact on them. It's not easy, and I hate to say it, but we are getting pretty good at at.

Sunday, June 16, 2013 12:45 AM CDT

Father's Day 2013 is being spent, at least partially, at Children's Healthcare of Atlanta. Connor has been here since Friday getting what his doctor called, "the Roundup of chemotherapy". He said it will kill everything that it touches and drive his counts down. His counts should recover quickly this week, but on Friday, he will be back in the hospital for the exact same treatment.
The drugs they are administering are making him vomit. It is difficult to watch. As the chemo goes in I could almost set my watch to 5 hours later when the vomiting begins. This process is repeated every 12 hours for the entire course of the weekend.
Even as we prepared to leave the hospital just a few minutes ago, Connor began to vomit and that will delay our departure by an hour or so. Nothing too long, but just that constant reminder that cancer can change the course of your day in a nano second.
Beginning tomorrow Connor will start a hockey camp. The camp lasts from 8am until 4:30pm each day and involves 6 hours of ice time and off ice training. This is only a short respite from cancer. The camp lasts until Friday, but unfortunately, Connor will be missing Friday. He will be admitted back into the hospital on Friday to receive the exact same treatment he had this weekend. But since the treatment will be back to back with this weekend, his counts will plummet. He will be count dependent to leave the hospital. The doctor tells us that could be as long as a month. Connor says he will be out in 2 weeks. I have a feeling Connor will win that fight too.

Friday, May 31, 2013 9:30 AM CDT

The sobbing that woke me at 3am was gut wrenching. At first I wasn't sure if I was dreaming. I was sleeping so poorly that I wasn't sure if I was dreaming the sounds or was actually hearing them. But they were real. I sat up in my make shift bed at the hospital and got my bearing and looked across at my son, sleeping soundly next to me in his hospital bed. It was then that I realized where I was and that this was not a dream.
My son was safe and asleep but the tears in the hallway were real. A parent knelt by her sons side trying to console him. He looked to be around 7 or 8 years old and scared. He was just sobbing and saying "it hurts mommy it hurts!" Over and over he repeated this mantra. I could only stare through my hospital door window and feel empathy for this mom and her son. I have been on that same floor on my knees with Connor. I have heard those cry's from my son and have felt just as hopeless. For now I could just glance back and see my son sleeping and be thankful. Tonight he would sleep without tears.
At 9:30am today the doctor came in to tell me that so far Connor was doing great. They would once again look at his counts at the 42nd hour and again at the 48th hour after beginning chemotherapy. She said if everything goes well, he could possibly be out by 5pm on Sunday night. She laid out the next 6 weeks for me in some detail.
In 2 weeks, Connor will be back in the hospital or 4 days to get another round of high dose chemo. Exactly 2 weeks after that he will be admitted again for another 4 days, although he will be count dependent to get out after that time. Following that he will have to come back in to get another high dose chemo and he could be in the hospital for another month. He was awake to hear this and his only concern is losing yet another summer to cancer. I see it differently. I want to see next summer or the summer after that. But being 12 and missing days at the lake or on the beach is difficult.
This journey will be long for sure. At the end of the day I just want my son to be healthy. I hope that the courage and strength he shows me are things he can show his own kids someday. I believe that they will have someone very worthy of looking up to. For me, I am happy to say I can look up to a 12 year old and the life lessons he teaches me daily. And for now I am also just happy to look over and watch him sleep. Sleeping peacefully by my side and not a tear on his face.

Thursday, May 30, 2013 8:57 PM CDT

For those that have read this journal since its inception, you will know there are actually 2 separate journals. There is the journal that you all can see and read, and there is a private journal that I write to Connor. My estimation is that better than 90% of everything I write, you can read. But there are days when the topic is too dark or the subject matter is just too personal to put it out there for all to see. The interesting thing about that is the fact that I have been told I am very "open" on this page. The truth is, I am very open and honest. But some things, for now, are just for me and Connor. I do plan on publishing this book when he is done with chemotherapy and every entry, even the private ones, will be out there. But as I told my sister Susan tonight, this journal will be a complete recount of Connor's courage for the 6 years he will have gone through chemo. I will include in the book every post and well wishes from every one of the 40,000 views. I believe he will be proud to know that so many people have been touched by his journey.
Today began with waking up at 6am and coming to Children's Hospital for another round of chemo. Prior to chemo we had to do another bone marrow aspiration and a spinal tap. These require Connor to go into a surgical room and be anesthetized while they perform these painful procedures. He also weighed in at 97 pounds and was 4'11.5". He was actually disappointed that he is still not at the 5' mark yet. As a proud dad, I look forward to that too, but with height comes age, and with age comes separation. I want all of my boys to stay boys forever. So as a proud dad I am not too proud to admit that their youth steals mine.
When the height and weight was done and the surgical procedures were completed, I was told that the counts were all good enough to complete his next round of chemotherapy. So we made the short walk from the surgical suite to the hospital admissions where Connor was, once again, admitted for another round.
This round of chemo is another High Dose round. The drug of choice this time is Methotrexate. The dosage level is 1,000 times more than he has ever been given before and must be administered over a 24 hour period. The drug filters through the kidneys and it is very toxic. It comes in a large bag and looks like lemon lime Gatorade. The doctor made sure to warn Connor that after he urinates, be careful when shaking it dry. The chemo will come out in almost as high of concentration as it goes in and it can "burn your skin if it touches it". Can you imagine? This cure that is coursing through my sons veins will burn his skin if he comes in contact with it. Even the nurse was fully covered from head to toe in protective gear when they began administering the drugs. This is just plain scary. I am a 48 year old and try to imagine how I would feel if all of this was happening to me when I was 12. I can't even begin to imagine it.
But in true Connor fashion, he smiled through the entire process. As I type this, he is watching tv while the chemo is slowing entering his bloodstream through the port in his chest. If I could change places with him I would, but I think he actually handles this better than I would. His innocence is his savior. He understands more about life and death than most 12 year olds, but at the end of the day, he is still a kid.
The infusion of methotrexate began at 5pm today. This will continue until 5pm tomorrow. They will then monitor Connor and his kidney function for a couple of days. He will be "count dependent" to get out of the hospital, but it should be Sunday provided all goes well. We just have to make sure he doesn't have any bad reactions to the drugs that would need to be handled by the hospital staff.
So far we are about 5 hours into the infusion and he is reacting as expected. He is restless and nauseous but overall he is in great spirits. He said that he can't believe that he has to get this drug continuously for the next 24 hours, but he understands. It's just going to be a very long night and an even longer day. Sleep will come at a premium cost tonight. I am sure it's not a price that Connor and I can afford. But who needs sleep.
So I will sign off tonight by saying thank you. Thank you to all of those that have and will continue to support Connor. He is a little shy about his "following" but he does say that it is very cool. He also likes that I only share some of the journal with everyone. Connor reads every post on this blog. He says that the private ones are just between us, "but when I beat this, they can read about our private stuff then". So I will honor him by one day publishing his story and our journey. So if anyone wants to know what this has been like on each day, I guess you will have to hang out till the end.

Wednesday, May 15, 2013 3:11 PM CDT

Another week in the hospital came to an end on Monday. A week of high dose chemotherapy followed by 2 weeks of rest and then back into the hospital for high dose methotrexate chemotherapy at the end of the month. And such is the life of a relapse cancer patient. It's funny, in 10 days it will be 2 months since diagnosis and I can't remember life before cancer. I mean sure, I remember not having to hold my son while he throws up or giving him injections at home and watching him cringe as he gets up the nerve to have me inject him, but I believe, as a whole, we are settling into our new normal. But it's still hard to remember when we weren't fighting cancer.
Since none of us were a bone marrow match for Connor, we have chosen to just go the chemotherapy route, for now. This seems to be the most logical route since it poses the least amount of risk. But some thoughts came over me today as I listened to the radio. Roger Daultry of the music group The Who was on the radio and talking about a group that he is a part of called Teen Cancer America (I think) and he was talking about how cancer affects kids that are between the ages of 12 and 23 much harder then on people younger, or older than that age group. The doctors had spoken to us about that and told us how going through 3 years of chemo would be hard on Connor because of his age. A you can imagine, there are a ton of statistics and opinions being thrown at us daily. It is a bit like taking a drink from a fire hose. Some of it is being digested, but most of it is just going right on by.
Teen cancer is indeed hard. And now, having had a child with cancer and a now pre teen with cancer, it is different. They understand more. They do remember a life without cancer. They remember not having to take pills or get needles or feel lousy on a daily basis. They know that people do genuinely care about them and how they are feeling. They also want to be in public and say hello to those that are asking so that they can share a smile and a hug. But they also know that this will make them tired and a nap is just around the corner. They know that their friends miss them but they have no idea how to handle a diagnosis like cancer. They want so much to just fit it. They want their friends to just see the same old kid that sat next to them in English class and treat them exactly the same. They want to just blend back in. Bald head and all, they want to just be one of the gang. No special treatment, just let them be a kid. Just like before.
All too often the word that keeps being used about Connor is, "Inspiration". I have been told by 10 year olds that he inspires then to fight through their cancer all the way to 50 year olds telling me they think of Connor if they are having a bad day. I have even had people in their 70's and 80's tell me that Connor inspires them. They believe his bad days put their bad days into perspective. Almost 28,000 visitors have come to this site to check on Connor. That is quite an impact. All of that support inspires him. I have never seen anyone make lemonade more than Connor on the lemons he has. That boy can make anyone smile. And I do understand how he inspires people, he inspires me daily. But even more so are the other people affected by cancer. His brothers.
Each day that Connor battles cancer, his brothers fight along side. To say that we have been hands on parents for the past 2 months would be a lie. We are far from it. We set unrealistic expectations on both Sean and Declan and they rise to the occasion on a daily basis. They never whine or complain, they just get it. They understand more than a 13 and 6 year old should have to that there needs to be a rifle approach to our parenting style. Right now, our sights are set on Connor. Most parents with more than one child use the shotgun approach. The love and concern from parents is showered upon their kids and everyone gets a little piece on a daily basis. But for the past 2 months, our primary laser focus has been on our middle child. I know they get it, I know they understand that this is temporary, but I wish to publicly thank them. They need to know that our "new normal" is temporary. They need to know that I love them as much as I do their brother. They need to know that "this too shall pass". And lastly, I want them to know I appreciate them. If I don't tell you enough lately, I sincerely do appreciate all that you do and how you both help out.
The next 2 weeks will be spent with daily shots given at home, twice a week visits to the hospital to have blood work done to find out when his counts bottom out. (And they will, it's not a question of if, but rather when) and then prepare to go back to the hospital for another 5 days. All the while trying to allow Connor to keep being a kid.
We will try to play golf a few days a week and we will even try to make hockey tryouts this weekend if his counts are up. It's all a part of a family with a cancer patient. It's much like your family except we spend a few more days at the hospital than most. We still laugh, play and even fight like kids are going to. At the end of the day, we want what every parent wants, happy and healthy kids. The good news is, the speed bump we are going over now hasn't taken away the kids happiness. And the rest will come in time.

Thursday, May 9, 2013 3:25 PM CDT

Something tells me that I may ramble a bit on here. Mostly because I have several topics I want to write about and none of them really tie together that we'll. but I will do my best.
Most of the time when I write on here I try to wait a day or so before I write about an interaction with people. I do this to protect the identity of people or they never know if it was them or someone else that I spoke to that triggered a thought. However, this person said they typically don't read this page because it is "too painful" for them to read. They said that if they don't read it, then they "don't have to think of it", but that they, "always think of Connor".
As someone who is in the middle of this daily fight, I can tell you, I wish it was that easy. If there was a way to just shut off the thought of my son getting yet another spinal tap, or dose of chemo. Each day when I wake up, I get to look at that smiling face and cherish each moment I get with it. You see, I don't know that I would "turn it off" or "not think about it". Connor's cancer isn't who Connor is. It is a small part of what makes up a really great kid, that is, if you get the chance to know him. In his 12 years I have never known him to walk up to someone and say, "hi, my name is Connor, I have cancer". Most of his friends, kids that have known him for years, will tell you that before March 23, 2013, they had no idea that he ever had cancer. Even after making a trip to CHOA with Connor's Hope to deliver bags to kids that are sick, he never boasted about it. He is just doing something that he believes to be good for others. And who needs a pat on the back for doing the right thing? Isn't that why its the right thing?
I try to never get upset when people say things about not reading so they don't have to deal with it. I am sure that most people think that cancer is pretty depressing. Nothing but bad news and death. And who wants to wake up and start their day off with that? I get it. I call it the ostrich approach. Bury your head in the sand and then the bad stuff that happens around us everyday is somehow not really happening. I am guilty of it too. But Connor wakes up to this reality everyday. There is no way to bury his head in the sand.
And today's reality was a trip to CHOA to be admitted to the hospital again and have a spinal tap and get another round of chemotherapy. He will be in until Monday at the earliest.
While Connor and I waited in the surgical room for his spinal tap to begin, his doctor, Dr. Bergsagel, came in and gave me the results to the bone marrow match. There wasn't one. None of us match. As I have said in the past, it is a very frustrating road. We have the emotional ups and downs of anyone's regular life, and then we have the extremes of a cancer diagnosis ups and down. Frustrated is just not an adequate enough adjective to describe what is going on now.
Now we are tied into a chemotherapy protocol for at least the next 6 weeks. During this time, we will decide on what direction we will go. We can still get bone marrow from the national registry if we decide to go that route. But we have no idea at this point what route to take. One item I did find interesting was when i asked Dr. B what he would do if it was his son. Some of you may remember that i asked the same question of Dr. Lew when we met with him last week. Dr. Lew said he would do the bone marrow route. When I asked, Dr. B said he would go the chemotherapy route. This is what I am talking about when I say that this can be frustrating. Here are 2 doctors on the same team, both experts, and both with the exact opposite opinion of what they would do.
As the doctor was telling us this information about what he would do, the anesthesiologist came in to put Connor into a temporary slumber to allow the next spinal tap to take place. He told the doctor he wanted to see if he could stay awake once given the drugs. It didn't work. I took out my iPad to tape while the doctor was administering the fentonal, (a drug to relax you) and a nurse told me I was not allowed to tape. I stopped taping and the propofal was given and he was out. The spinal tap takes only a few minutes and he was back with me in the recovery room. We are now back in our new room at Chateau CHOA room 182.
When we checked out of the hospital it was 14 wagons to leave. Connor's room was loaded with so many items. This time we decided to take it easy. It was only 4 wagons to load to stay for the next 5 days. I love that he wants to make this as comfortable as possible for himself even if he is only staying a few days.
On my 4th and final trip to the car, I met a couple and their 5 year old daughter. She was diagnosed with ALL about 2 weeks ago. We talked for about 20 minutes. It never fails when this happens. A swell of emotion as I remember when Connor was diagnosed 8 years ago comes over me. I offered some insight to what we have been through, but I was sure to let them know that this is an individual journey. Each family that faces this disease handles it differently. Each is unique. I don't know if I was able to offer insight, but I can tell you that each of these families offers me strength. I am reminded of what it took to get through this the first time. I see them beginning down the road that I was on 8 years ago and I am reminded that we made it. I am reminded that we all made it. And while the journey begins for us again, I know we can make it again. I know that no matter how many days I bury my head, no matter how many people read, or don't read this journal, no matter what path we ultimately decide to take, we will make it.

Saturday, May 4, 2013 6:31 PM CDT

My dad always said, "Son, if you want to know who someone is, look at his friends". If I do that for Connor I can see that he is a fine young man indeed. I don't think I needed to look at his friends to know this, but today I watched 12 year old boys become the most selfless young men I have ever seen. Too many people say that kids today only care about themselves, I know a group of young men that do anything but.
Today started out with Connor vomiting uncontrollably in the bathroom. When i walked past the door i could hear him. I opened the door to find him on his knees throwing up. I ran to get him a towel and then I put my hand on his head to comfort him. He was cool to the touch. This is an important detail. Fevers mean hospital visits and Connor doesn't want to go back to the hospital. Especially not today. Today was the team party for Connor's hockey team and he has been wanting to go ever since he got out of the hospital 2 weeks ago.
Hockey parties are no different from any other end of season sports parties. There is food, music and the kids get to just hang out and play. Then you have the awards for each kid, gifts for coaches and team manager, and then everyone slowly leaves and says their goodbyes until next season. But our party took a slight turn. After the coaches got their gifts, one of the players, Will, got up and asked to address the room, Connor in particular. He asked Connor to stay seated while he asked the rest of the team to stand at his side. He then went on to tell Connor that he had been selling wristbands as a fundraiser. He got the other kids on the team to help as well. They sold them at school, at their parents work and anywhere else they could sell them.
This young man is one of the Defensemen on Connor's team. It is a Defensemen's job to protect his goalie. Will takes this job very serious, both on and off the ice he is still defending Connor. Helping him to keep the bad guys away so we can win. Connor has a small Army of both children and adults that are by his side daily and helping him to win the biggest match of his life.
My father has been gone for almost 14 years but his words still ring true. If you want to know a man, look at his friends. Connor has awesome friends. They come from great parents and great families. They foster a sense of community and they just get it. At the beginning of this season, we made a change from a team that was 20 minutes from our house to a team that is almost an hour away. I asked Connor, "are you afraid of the change? Are you worried they won't like you?" He said, "no dad, I know how to get them to like me.......just stop pucks. Everyone likes a good goalie". I am so glad that it came down to a lot more than just stopping pucks. As it turns out, he did let a few in this year. But the kids see so much more than a goalie. They see a good kid and a good friend. Someone with a passion for the game of hockey and with a passion for living.
I truly believe the kids on this team will not remember how many games we won or lost, or how many goals were scored. But they will remember the team. They will remember how they came together for one of their own. They will remember that there is more to this world than just themselves. There are bigger causes out there and they can be a part of making the world a better place. I was very proud today to call myself a friend of everyone in the room today. Because not only did I see who my son is, I got a glimpse of who I am too.

Saturday, May 4, 2013 7:50 AM CDT

The appointment on Monday was a success. Connor weighed in at 96.3lbs and he is 4'11 1/4" tall. He continues to hope that he grows another foot, but I can wait for that day. I hope it happens slowly over the next 20 years or so.
Last night I was looking at the picture of Connor when he was first diagnosed. He was so small, so fragile. I can remember wanting to scoop him up in my arms and make it all better. I looked at other pictures of him going through the process. He always looked happy, or calm. It was as if he understood everything that was going on and it was his way of saying, "everything will be ok". Thank goodness the camera wasn't focused in on me. I have a feeling the image would not have been so heartwarming.
This week we found out that his counts have gone way up and that he is allowed out in public again. This, of course, led Connor to ask the doctor, "when can I go back on the ice". And to his surprise, and mine, he said, "since his counts are great and his platelets are up, I don't see why you can't get on the ice tonight!" And since it was Monday and Declan had practice, out he came. Full pads and ready to take on all comers. Now, in this case, all comers were 6 & 7 years old, but you have to start somewhere. Not sure if this will be a weekly event, but I loved having him out there with me. And Sean joined Declan's practice too, so the 4 of us were on the ice together. It was the first time I have had all three boys on the ice in all of their hockey equipment. Sure they have skated together, but never in full gear. And for an hour on Monday night, everything wasn't about cancer. It was about a dad and his boys enjoying some time together. Nothing pleases me more.
This week was another anxious week. We waited all week to find out what comes next. And then at about 11am on Thursday morning, my phone rang. It was Dr. Lew from Children's Hospital. He said, "I have some good news, there are no detectable amounts of cancer left in his bone marrow. He is in remission." I actually made him repeat it to make sure I heard it correctly. There was a stunned silence on my part for a minute and then I asked, "so what does this mean?" Dr. Lew went on to tell me that this is the "best" that we could hope for because it opens up our options on treatment. The initial thought is to just continue on with chemotherapy for the standard relapse protocol. But we can also still do a bone marrow transplant. Then I asked, "which one of us is a match for bone marrow?" And he responded, "the results are not back yet." Even when we get a taste of great news, we can still be left frustrated.
For now, we are going to stick with a standard protocol. Connor will go back into the hospital on Thursday, May 9th and stay until Tuesday morning of the following week for another round of chemotherapy. So he will be in the hospital for Mother's Day. We will meet with the doctors and try to determine if we want to stay on this protocol or go the bone marrow route. So even when we know, we don't really know. This is the life of a cancer family. A lot of unknowns. The only thing to do is to just put the trust in the doctors helping us make decisions. So we will try to keep it "normal" until we pack up the car for the 45 minute trip to Children's Hospital on Thursday and spend our night playing X-box and watching tv. At the end of the day, I will be hanging out with Connor. That sounds like a pretty good day to me.

Saturday, April 27, 2013 11:45 PM CDT

When I was a kid, I loved roller coasters. I think it was the going up part that i liked the best. It was the anticipation of what was to come on the other side of the peak. The speed, the excitement of dropping down and spinning around the next curve or going upside down. Anyone that has ever been on a roller coaster knows what I am talking about. As I have gotten older, my excitement has diminished. I blame it on a back injury suffered in the Marine Corps, but in reality, I am just not a fan. I like to be in control and I feel roller coasters are the opposite of being in control. My favorite roller coaster, if I have to pick one, is Space Mountain at Walt Disney World. For those that haven't been on it, the entire ride is in the dark. The twists and turns are not placed in your line of sight so you don't know if you are about to drop or go right or left. And before you know it, it's over.
Last Saturday, the day Connor came home from the hospital, it was like the ride had ended. Believe me, I knew we got back in line to go on again, but for the time being, the ride was over. I was back in control of my son and what he would do during the day and night. There were no more midnight and 4am wake up calls to check his vitals. He would sleep soundly through the night, as would I.
And then came Wednesday night. I can't explain what actually happened, but I can tell you I couldn't sleep. I knew that the ride had started again and we were on our way up to the top of the roller coaster again. There has been a pit in my stomach at the anticipation of it. I know exactly when we will hit the top. And sometimes knowing is more painful than not knowing. I can see what is in front of me and it is scary. This is one of those times I wish I was in the dark. I wish I couldn't anticipate the twists or turns that are about to happen. But sadly, this isn't the case.
On Monday morning at 9am, Connor will be back at Children's Hospital of Atlanta at Scottish Rite to have his third bone marrow aspiration in just 6 weeks. After numerous conversations with Michelle and also with Connor, I can honestly say, we don't know what we want the outcome to be. This one test will tell us the amount of cancer still left in Connor's body. If the amount is less than .01% then we will go with chemotherapy for the next 3 years through his port. A ballpark figure is about 60 chemotherapy treatments and another 10 - 15 bone marrow aspirations along with 5 - 10 spinal taps. None of this sounds fun for an adult, never mind a 12 year old. However, this is a familiar path for us, and for Connor. But this is obviously not foolproof. If it was, I wouldn't be writing in this journal.
If the cancer is more than .01% then they will more than likely tell us Connor needs a bone marrow transplant. This is Connor's hope since he knows that a bone marrow transplant, if successful, is the cure. And since Connor asked me to find out more information about this a few weeks back, I have done what any father would do and I did some homework.
Now for the ride of my life. If we choose a bone marrow transplant, there are a few things we need to do. First, find a match. We started this process 2 weeks ago with all of us. We should know the results this week.
I should let all of you know, I have said that I believe he will need a bone marrow transplant and that Declan will be the match. How do I know this? I don't know, how did I know that the cancer was back? I just had a feeling, and the feeling that Connor will need a bone marrow transplant and Declan will be the match is just something I feel.
So with all of this said, it's time to tell you about my homework. I looked at the pros and cons of both chemotherapy and a bone marrow transplant. Since we have been through chemo and Connor seems to be hell bent on a bone marrow transplant, I have focused more on the latter. And while the pros are great, the cons have me shaking in my boots.
A full 18% of transplant patients die, compared to just 3% of chemotherapy patients. And once you have the bone marrow transplant, you can't go back to chemotherapy. So if the transplant doesn't work, we would be out of options. Now as you read this, I want you to imagine the toughest conversation the average parent will have with their 12 year old. And now I want you to imagine having this conversation. "Son, if you do this, and it doesn't work, there is a good chance cancer will win this time. You will be out of options and you could die." And yes, it was said in that matter of fact way. We truly believe that Connor needs to be part of his treatment plan. And in order to be an effective part, he needs to know the facts. I can remember when I was dreading the birds and bees conversation, oh what I would give to just go back and have that again instead of this.
Connor did not speak. He cried softly into his hands. We asked if he had any questions and he said no. I asked if he just wanted to think, and he said yes. He wanted time, like anyone would, to absorb the information and make an informed decision when the time comes. You see, he also knows this roller coaster all too well. He has been on this ride before. We made some small talk, made a few jokes to lighten the mood, and left him alone with his thoughts in his room.
Another fun fact that we just found out Friday, one of the insurance companies that we have a catastrophic care plan through says that this is a preexisting condition for Connor so they won't pay on the insurance premiums that we have been paying since 2009. Now obviously, I don't care what it costs to fix this challenge that we are faced with, but I feel a little let down that one of our contingency plans, at least for the moment, has fallen through. We are going to fight this since he was "cured" and now it is, in essence, a "new" cancer diagnosis. But it is one more loop on the roller coaster so we just have to hold on.
During the first diagnosis over 8 years ago, it was so hard for me to ask for anything. I felt helpless enough and couldn't bear not to cut my own lawn, or get my own meals or put gas in my own car. I quickly realized that it was others that would help us get through this. So as humbly as I can, I would like to share the information that so many have asked about. And that is, where to send financial help to help us pay for this treatment. And I do hate asking, but I will put it out there. Please make checks payable to either Don McMahon or Michelle McMahon and mail them to:

First Landmark Bank
Attention: Branch
PO Box 5138
Marietta, GA 30061 - 9952
Please put account number 0100005388 in the memo line along with Connor McMahon's name.

The past 7 days have been really great. I have taken Connor to play 9 holes of golf twice and a friend was able to get Connor onto the Atlanta Motor Speedway track to race a bandelaro car. He had fun, and more importantly he got to be a kid again. He was away from the hospital and from the ups and down of this roller coaster ride and has spent the past week on a flat straightaway . No blind curves, no twists, no turns. But make no mistake about it, tomorrow morning, we start up the hill on our roller coaster again. I can feel the knots coming in my stomach already. The only thing to do is hold on for the ride.

Tuesday, April 23, 2013 12:18 AM CDT

The emotional pendulum that is the life of a cancer patient, swung in the opposite direction on Saturday. In my last post on Friday, I talked about how disappointed I was that Connor wasn't coming home. I was told that "maybe by next weekend you can have him home". All of the ups and downs have a profound effect on everyone in the family. Including Connor. His spirits were also down on Friday with the news that he would have to stay another week.
On Saturday, life for the family still needed to roll forward. Sean and I went to his hockey teams year end party at a paintball course. We got there at 10am. When we arrived, all of us were told to leave our cell phones in our cars so they wouldn't break. Sean and I did as we were told and left them in my car. We had a very fun day running around and shooting our other teammates. Exhausted, our day was finally over at 2pm. As we walked to our car we were discussing our plans for the day. They included, getting much needed showers and heading down to see Connor at the hospital. It was my night to stay with Connor and I was looking forward to it.
Upon reaching my car and grabbing our phones I was a little alarmed. I had 14 missed calls and Sean also had missed calls. All from Michelle. This can't be good. I nervously was beginning to dial her when my phone rang again. It was Michelle. He words were music to my ears. "He's coming home! He's coming home!" The huge smile and tears that were now on my face were a welcomed site to Sean who was also very happy to hear the news. I got out of my car to tell one of the other coaches that was parked next to me. I couldn't wait to tell everyone, but more importantly, I couldn't wait to get to the hospital to bring my boy home.
The 30 minute trip took only 20 as I sped down State Road 400 to Children's Hospital of Atlanta. I made as many phone calls as I could in that time and I noticed Sean was texting away to his friends. We wanted to share with as many people as we could.
When I arrived at the hospital I was given the story on how this all came about. Again, on Friday I was told another week so what is going on? The doctors that work during the week are different from those that work on the weekends and this was the case. A new doctor walked in and said "his ANC counts jumped overnight from 10 to 120 and he looks good and he is eating good, I see no reason why he can't go home." Stunned, Michelle responded, "wait, what about the 3 days of rising counts and not coming home till next week?" To which Connor replied, "Mom, STOP asking questions! If this guy says I can go home, then LET'S GO!" As I have said before, only Connor can make a room smile during a cancer diagnosis. For those that saw his room or even saw the news story on 11Alive this morning about Connor, you will get a chuckle that it was a total of 14 wagons full of stuff to get his hospital room empty of all of the things we brought from home and the gifts that were given to him over the month he spent in the hospital. The 15th wagon carried out Connor who was being pulled by his big brother Sean.
So what's next? Well, great question. Here is what we know so far. He will be home until Monday when we take him in to get another bone marrow check. He needs his cancer to be less than .01% in his body. That will set us on the path of chemo for 3 years. If it is more than .01% then it will be a bone marrow transplant. But as I write all this, I am only writing what I believe I know. It was made very apparent on Saturday that the pendulum can swing at any point and in a direction I never thought was possible.
Many have asked about getting tested for bone marrow should Connor need one. We are so thankful that you have asked. And believe me, we would absolutely want to ask anyone if we need it. But I do want all of you to be aware that we just got the bill to have the 4 of us tested. The hospital charged $3371.50 each or $13,486 total to have this done. Our insurance will cover 80% of that. While we are glad so many are offering we want you to know up front what you are signing up for should we need it. This will create some challenges for us and we don't want to have anyone have these same challenges.
With that said, on May 29th, Massage Envy at the Mall of GA will be donating 100% of the proceeds from the day to support Connor and his medical bills. We are also selling Team McMahon bracelets at $2 per band. I will have more information as the weeks progress. We have also created a trust account to accept donations. That information should be available this week.
So Team McMahon moves ahead. Exactly one month ago our lives were changed forever...(again). What we have learned over the past 8 years is that there are challenges and obstacles that come along in everyone's lives. It's how we respond and react to them that makes us who we are. So, as the McMahon mantra goes, "just take it one day at a time". We are taking our own advice and enjoying each day. We do not know exactly what is in store in the coming months, but we will get through it. I know God has a bigger and better plan for Team McMahon. And He controls the pendulum. We are just here for the ride.

Friday, April 19, 2013 10:13 AM CDT

These posts are but a glimpse into the road that cancer brings a family down. I envy those that get to go back to work and move on with their day or their lives for that matter. This road is truly bumpy and no written words can describe the pain this puts in my heart.
The doctors just left the hospital room and told me that Connor's counts fell last night. In layman terms, he isn't coming home today, or this weekend for that matter. She said they are now hoping by next weekend he might get that opportunity. As they walked out of the room Connor said, "well isn't that just great". How do I respond to that? I will tell you, there is no good response. The facade of smiles and uplifting spirits that I try to portray everyday was just taken out of me with a swift kick to the stomach. I am only thankful that he immediately rolled over and is now sleeping silently next to me as I weep. Hopefully he sleeps long enough for me to compose myself. But there is only so much I can take.
In the past few days we have been systematically taking things out of his room and getting ready to bring him home. Four wagons full of things and it still looks like we haven't touched a thing in this place. I think I was trying to will his counts up. Almost like I was trying to will the cancer to stay away. Neither worked.
I just had a conversation with a friend about how we seem to be handling this diagnosis better than the first. Maybe it is because we know what to expect. But then a day like this comes and I realize, part of knowing what to expect is never getting your hopes up because to can always expect the unexpected. It is very clear, I am not handling this diagnosis any better than the first, this still sucks, 8 years later, it's just as bad.
I hate making this journal about me. I want this to be a record of Connor's road. Not mine. But I guess in some ways we are on this road together and I am just having a bad day. I allowed myself a brief moment of hope that he was coming home. I don't ever want to lose that hope. After all, that has been Connor's mantra, "never give up hope". I just hope he allows me one bad day on occasion, or even a few bad hours to retreat back from this fight so that I can feel stronger and help him in his fight.

Tuesday, April 16, 2013 6:19 PM CDT

It is said that a rising tide lifts all boats. I know this is true. But I also know that Connor's Spirit lifts all spirits around him. And that is the case today. He is in great spirits.
Today is Connor's last day of chemo in this first 25 days. That's right, he has been in the hospital for 25 days. It's easy to forget how long has been here. But not for him. He remembers every day and can't wait to get out. The challenge we face is not knowing when he will get out.
Connor is currently "count dependent" for going home. What this means is that he must have a certain levels of white blood count, ANC, Hemoglobin and platelets. Since today is the last day of chemo, he needs to wait to see if his counts go up. His counts will go up sometime between day 29 and day 45 in the hospital. Once up, then the doctors will perform another bone marrow check to see if the cancer is less than .01% in his marrow. If it is, he will have his next protocol set. Which in that case would be another 3 years of chemotherapy treatments. If the cancer in his marrow isn't below .01%, they will more than likely begin the process of doing a bone marrow transplant and a completely different protocol.
Each of these avenues has pros and cons. And each one will be heavily weighed once we know something. But we don't know anything. This is a waiting game. And the day they were giving out patience, I believe I was in the bathroom because I am not a patient man. But wait I must.
The best part about waiting is the time I get to spend with Connor. My son has a great sense of humor. It's just his smile that can make me feel great. Its funny, he is fighting cancer and yet I look to him to make me feel good. And I know that Connor inspires people. I had a call today from a friend that was telling me that if they are ever having a bad day, they think of Connor. If he can be in the hospital and fight this with a perpetual smile on his face, then whatever they have going on just isn't that bad.
Let's put that statement into perspective. Close your eyes and think about something bad that happened to you this week. Flat tire going to work, co-worker made you mad, you don't like your Language Arts teacher, you have too much homework. All of these can make for a bad day, but someone always has it worse. Connor just told me tonight that he isn't happy that he has cancer, but he knows that other people have it much worse. So even if he is having a bad day, he knows, someone out there has it worse than he does and he knows he can handle whatever is thrown his way. Leave it to a 12 year old to remind me that I don't have it so bad. The tide was definitely lifted by my son today.

Saturday, April 13, 2013 8:12 PM CDT

Most parents worry that their kids will grow up to be well adjusted. I know that Michelle and I are no different. But as we watch our kids grow into young men we are comforted by what we see in their actions.
I use this journal as an outlet for what goes on in my head and heart. It is a very cathartic process for me to write down what I feel. For the most part, once I write it, I forget it. It is my way to just, "put it out there" and never think about it again. I do realize that most people that know me are probably shocked by the emotions that I sometimes share. I typically just am not that type of guy. Not that there is anything wrong with that. (Just a little Seinfeld humor kids)
But over the past few days I have been made aware that my own kids have found their own outlets to share their feelings. It was really heartwarming to know that my kids have actually taken the advice I have been giving them. And the advice of having an outlet for their feelings is not just due to a cancer diagnosis, this has been something I have shared with my kids since they were old enough to understand. Having 3 boys that can be the rough and tumble kids is important. But I think being in tune emotionally can serve them well as they grow into young men and adults. I hope their future wives thank us later.
As for Connor, this week has been a typical chemo week. He has lost most of his hair and his face is getting a little puffy from the steroids. But as he always does, he has taken the hair loss in stride. He completely gets that this is just part of the process and that hair grows back. As some have seen, his younger brother shaved his head in solidarity and I will be doing the same this week. Sean on the other hand would like to shave his on May 23rd. That is the day AFTER school ends. Connor actually asked him to wait. Just one more sign that we may be doing something right in the way we are raising our kids.
The coming week will be relatively quiet. Beginning tomorrow he starts 2 days of rest. Then on Tuesday he gets chemo and then by Friday or Saturday, he will go under sedation again to have another bone marrow and spinal tap. The results of that will determine if he needs to continue chemotherapy for the next 3 years, or get a bone marrow transplant.
Last night Connor asked me what was involved in a bone marrow transplant. I told him what I wrote the other day, be careful what you ask because you just may not like the answers. But he wanted to know. So we had a good 30 minute discussion on the topic. Hard to believe I am discussing matters of life and death with a 12 year old. Harder still to believe that he understands. But he does. And when the time comes, he will help us make the decisions for his treatment and for the rest of his life. I couldn't be prouder of all 3 of my sons.

Thursday, April 11, 2013 6:00 PM CDT

There is a saying. "Be careful what you ask for, you just might get it". My Father would say that to me on occasion growing up. He tried to let me know that sometimes not knowing, is better than actually knowing the answer. Today was a day that I sure do wish I would have taken his advice.
The morning started out good today. Connor and I were up at 9 and down to the basketball court for some PT by 10. There was a Physical Therapist there with another boy about Connor's age and she asked if we wanted to join them in a game of "HORSE". So we did. And it didn't really go that we'll. (for them). I mean, for those that know Connor, or me for that matter, we are somewhat competitive. And that may be an understatement. Which is why when they asked us to play a 2 on 2 game after, we were shocked. But we also said yes. The results of that game were a little lopsided. In our favor. But the best part was, Connor was running a little, and playing and laughing.
The exertion on the court took its toll. Since this is a chemo week and Connor is both mentally and physically drained a lot, he wanted to go back upstairs to his room. He was very pale and he needed something to drink and eat. He also wanted to take a nap.
While we were gone, the nurse brought in his blood counts for today. His hemoglobin was very low and he needed some blood. After I got him comfortable and got him a shower the nurse came in and said he needed 2 units of blood to get his energy up. While she went to get the blood, his nose started to bleed. Thankfully, it was a short one. But after that 3+ hour nosebleed last week, I was a little concerned. But it stopped in just a couple of minutes.
As the blood transfusion was going in, Connor fell asleep. I was just sitting there watching him when one of his doctors came in. As you can imagine, after 19 days in the hospital, he wants out. I think that is where some of his frustration came from the other day. Connor hasn't quite settled into his "new normal" life. I decided to ask the doctor about Connor leaving the hospital.
She informed me that "if all goes well" he would probably get out at the end of the month long protocol. If not, then we would have to look at doing a bone marrow transplant and that process could take 1 to 2 more months in the hospital. So I asked, "can you tell me what is involved with a bone marrow transplant?" And so it began. The description of what is involved with a bone marrow transplant. From the very good to the very bad. From the recipient positives and negatives, to the donor positives and negatives.
This had my head spinning. Tomorrow, I am bringing Sean and Declan to the hospital for blood work to see which one of them, (if either) are suitable donors for their brother. I began to think of how if they are, they will need to be hospitalized to donate. I was thinking how this will negatively affect them. Even though they could literally be donating the actual gift of life to their brother. What pain would they have to endure to do it. I so badly want myself to be the match. I want to take all of the pain away from my kids and absorb it on my shoulders and in my heart for them.
I don't want them to shed another tear over their brother. I want to bear that burden. And most of all, I want them to be kids. I want them to be with their own family on Spring Break. (Although I am so VERY thankful to the 2 family's, the Kruzel's and Gagnon's, that took them as though they were their own.) I don't want them to have to get needles into their hip to draw out and harvest bone marrow for their brother. I don't want to have to wipe away anymore tears, including my own. This is exhausting. And with that said, I can't even begin to fathom how Connor feels.
While the doctor spoke and I listened, I couldn't help but think to myself. "Why in the hell did I ask this question?" I am not ready for the answers. Not yet. We aren't at that point in the trip and I shouldn't be rushing things. As much as I want this over, I have to work at this day by day.
At some point I said to the doctor, "thanks, but I have heard enough. If I need more information I will ask." She understood. She realized that I didn't want to listen to anymore "what if's" and I needed to deal with today. There right here and right now's of this situation.
So to my dad, who passed away in 1999. As you look down on me you can be happy to know, I remembered what you said about asking questions. A little late, but I remembered. So next time, maybe you knock over a lamp or sledge hammer to hit me on the head so I get the hint a little earlier. Because this was one of those times where, I don't really want to know the answer. Not yet.

Tuesday, April 9, 2013 10:42 PM CDT

A weeks respite from chemotherapy was halted today with the beginning of another round beginning. Connor received his vincristine, decadron steroids and 2 different antibiotics. His mood was not very good as a result.
I had a thought tonight as I drove home from the hospital. You can answer to yourself. No need to respond publicly. Since Connor was diagnosed, have you ever said "wow, glad our kids are healthy". Or, "I don't know if I could handle that if it happened to one of my kids". Let's be honest, this never happens to you. It always happens to someone else. And then we count our blessings and go on with our day. I will be honest. That was me 8 years ago. And to have even more honesty, it was me just 3 short weeks ago. This was something we dealt with and it would "never" happen again so we could just go on with our lives. And we did. We moved on. We could empathize better than most having been down this road. But we never thought we would go down it again.
So, why am I writing about this tonight? I started out by saying it wasn't a good day. And I stand by that. Emotionally it was incredibly hard. Connor started his next round of chemo and he was not in the best of moods. I got the opportunity that I bet most parents wish they had. An opportunity to have a very open and honest discussion about life, death, and the ups and downs that every child faces. It was such a great conversation. We shared a lot of information. Most of which Connor asked me not to share and I won't. What I can say is that he is scared. And he is really mad. Mad at cancer, and wondering why. Why him. Why again.
All very valid concerns. None of which I have the answers for. I wish I did. I did hold him. I cried with him. I told him how loved he was. I told him that he is not alone in his fight. I told him that he would beat this. I told him that it is ok to allow the questions and concerns to take over his thoughts as long as he shared them with someone. I told him that his attitude is his own best personal weapon to fight this off.
These are all correct. I am sure of it. But a Father's perspective on a child with cancer is so different than a Mother's. While the end result is the same, unconditional love, the method of delivery is completely different. As a dad, I want to find the enemy and beat the $@%+ out of it. But this isn't that kind of enemy. I have days where the hopelessness is almost overwhelming. Today, as I cried with my son, I had one of those moments. And yet, it was during this moment that I knew I needed to be even stronger. He needed me and I wasn't about to let him down. I just hugged him and told him how much I loved him. I want a cure to this. I want a cure!
And yet, after all that, I wouldn't change a thing. I have said it before, Connor is destined for something greater than himself. I think he has shown that already in his ability to be selfless and give back to kids suffering from cancer. Some of those kids now provide inspiration to Connor to get him through his tough time.
And while I would gladly take over this battle for him if I could, I wouldn't change anything any one of us has gone through except the physical and emotional pain this has caused Connor and his siblings. The reason I wouldn't change the diagnosis for Connor is that I love who my son has become. And he became the child he is because of all that he has been through.
When we look at ourselves in the mirror, if we are happy with who is looking back then it doesn't matter what we went through. Both the good and the bad have brought us to who we are today. And all I can say is, I like who I see. I love who I see when I look at my kids. And all of this, every bit of it, came from four words uttered by a hematologist 8 years ago. "Your son has cancer". Those four words changed our lives forever. And said again just 17 days ago, they have changed us again.
Sure today was a tough day. But I know that others had it worse. I know that a tough day at work is now a lot easier to deal with. I know that other than this speed bump, my kids are generally happy. I know that they are loved. And best of all, they know they are loved.
Now I know that I don't have to tell anyone this, but if you are reading this at midnight, as I am currently writing this at that hour. And your kids are sleeping in the room down the hall. Go give them a kiss. Tell them you love them. And if they are away at school, or on Spring Break, send them a text. Let them know you are thinking about them. Sure, they may think you are being weird, or that they are "too old" or "too cool" to be kissed or to be told you love them. But deep down, they will smile. You will smile. And they will know, they are loved.

Friday, April 5, 2013 7:58 PM CDT

Another great day. And as it turns out, another public shout out by Michelle to our wonderful hockey family. I think she may be trying to put me out of my writing job.

To our hockey family,

I always knew that the hockey community was like none other. In the past few weeks, it has been proven over and over again. Several weeks ago, every one of you helped us to embrace Reece McPhail, our nine year old friend going through Leukemia treatment. That day was so memorable to me because I felt like we were all doing just a little bit to help him on his journey through this terrible disease. As a parent of a child who has been there, you meet so many wonderful people who just want to do something. As I watched all of our boys play that day, it really touched my heart. These goofy, sometimes awkward, silly boys looked at this young man with such compassion. I was overwhelmed by their kindness and sportsmanship. They all knew they had all played a part in making this day memorable for Reece. They had smiles and kind words for Reece, telling him what a great job he had done. I know years from now, they will look back on that day with fond memories. I had known for many, many years that hockey parents were special….or nuts…not really sure. Any parent who will spend hours and hours at freezing cold rinks, travel hundreds, sometimes thousands of miles, and spend the equivalent of the GNP of a small nation so their kids can play a sport, have got to be crazy. Truth be told, we are crazy. We are crazy about our kids and crazy about our sport. So many of my non- hockey friends just don’t get it. They don’t understand why we dedicate ourselves to a season that lasts the better part of a year, and why we are willing to sacrifice so much of our free time (sarcasm intended) to hockey. Unless you are a hockey parent, you just don’t get it. As Mario Lemeiux said, “Every day is a great day for hockey”.
Like I said, the hockey community is like none other, but there is not a word in the English language to describe our hockey community. Connor’s first day in the hospital was very emotional for everyone. We were all in shock, with so many thoughts in our minds. Connor was in bed, watching TV, not saying much to anyone. We both watched him, wondering what was going on in his mind. “What is he thinking? What are his worries? Does he want to cry? Scream? Curse like a hockey player?” The day inched by with a deafening silence. We tried to be upbeat and make small talk, ask him how he was feeling, could we get him anything? No was always his answer.
Then, there was a knock at the door. As Connor’s entire hockey team piled into the room, his face lit up. He first thought only a few teammates were there, but the players just kept coming. It was like the line up for the handshake at the end of the game…the line seemed endless. Connor was the happiest kid on Earth. We had an impromptu birthday party with presents and cupcakes and a very, very happy boy. It was at that moment, that I truly knew that our team was special. Talking to some of you now, I knew that the phone calls and emails were being exchanged, and this “field trip” to the hospital was organized pretty quickly. The outpouring of love for our son, and our family has touched me more than you will ever know. The meals that come every day are fantastic….just one thing that we do not have to worry about on our night home. It is not lost on me that we live very far from all of you. I cannot tell you how much we not only appreciate all of the meals, but the fact that someone is making the hour drive to our house everyday.
We are only 2 weeks into our “new normal”. Connor has another 3 year journey ahead of him. Mark Messier said, “ I think the thing you always need to keep in mind, you know, hockey is a game of one-on-one battles”. Connor’s fight is no different. This is a one-on- one battle that he will fight. Although he is in front of a sell out crowd who cannot stop cheering for him.
We have learned so many things over the past 8 years of treatment, maintenance, survivorship, and now relapse. We have learned that our support system is tremendous, we have some of the best friends anyone could ever ask for, and that our son is very, very loved. When Connor was diagnosed in 2005, we had a strong support system of family and friends. We still have that support, although it has grown exponentially over the years.
The words “thank you” just don’t seem enough. Our hockey community has, by far, some of the best people that I have ever met. Thank you to each and every one of you. I have never, ever been more proud to be a “hockey mom”. And, if you have not had enough great hockey quotes for the day, I will leave you with one more to think about...

“Ice hockey players can walk on water.”- author unknown

Much love to all of you,

Michelle

Thursday, April 4, 2013 9:04 PM CDT

For years I have updated this website. And for years people are always shocked to find out that me, and only me, updates this page. It has always been a very cathartic exercise for me. I don't exactly wear my heart on my sleeve on a daily basis, but we all need an outlet. And I certainly have my outlets. This page is definitely how I cope with Connor's new path.
With all of that said, I am going to mix it up a bit today. I was copied on an email that Michelle wrote to the kids and faculty at Dyer Elementary School after they organized a "pink out" in Connor's honor today. And after reading it, I realized, there is nothing I could write that could say it better. I will just write briefly about Connor's day.
He had an AWESOME day today. He also received a visit from his hockey coach Dan Mell and his family and they brought him an Angry Bird Swimmer balloon. It is a remote control helium balloon. He was having fun and smiling the entire time as he flew it around his room! It was great to watch. We were all smiling, especially as we walked the floor and took the bird for a walk.
As I walked the Mell family out, I ran into Coach Mark Ardagna. He was Sean's coach this year and Connor did some fill in work for his team during the year. Mark brought in a box for Connor to open. As he opened it, his smile got larger and larger. Inside was a personalized to Connor and signed Pittsburgh Penguins jersey from their goalie, Mark Andre Fleury. This particular goalie is considered one of the best in the NHL. Along with the jersey came a signed Certificate of Authenticity signed by the Vice President of the Penguins. This is such an incredible gift and the smiles that were provided to Connor by Mark and the entire Penguins organization will be hard to ever say thank you enough. We are touched that they would take the time to do this for Connor.
So now, without her permission, I am going to add the letter that Michelle wrote to her school. I hope I don't get in trouble for this. But if this is all I get in trouble for, then I am doing pretty good for myself.

To my Dyer family,
I have started this email, saved as a draft, gone back and deleted and started again. This seems to be my ritual for the past few days. I don't even know where to start.
My phone could not keep up with all of the texts that I was getting with the pictures of the pink out. Honestly, I was completely speechless. And for everyone who knows me, that is not easily done. :) We were just overwhelmed with the pictures of everyone in pink. Connor smiled and laughed at each picture that came in. The smiles on everyone's faces, and the posters and banners just touched my heart. It is an unbelievable feeling as a mom knowing that hundreds of children who do not even know my son are supporting and rooting for him.
We have been at Scottish Rite for almost 2 weeks now, and Connor has had some bad days, but definitely more good. He is getting out of the room every day to walk or work with the physical therapist. On the rest days when he does not get any chemo, they are able to unhook him from all of his IV's and he can be free. I told him that since he was unhooked, he could take a nice long shower. (GASP!! How dare I even suggest a shower?!)
I cannot thank you all enough. The outpouring of love and support that we are feeling right now I cannot even describe. At night when I am at the hospital and Connor is sleeping, it is easy for my mind to wander. I have all of those thoughts that I guess are normal...Why is this happening again?...It's just not fair. ..Connor doesn't deserve this...How do I balance taking care of Connor, Sean, and Declan?...What are the long term effects of these drugs on his young body?...Could my son die?...
And then my mind wanders back to the overwhelming positives in my life...Connor is in the absolute best place he can be....He has two of the best doctors in Atlanta, one of which is a top relapse specialists in the country....I have a great husband, who shares all of these struggles with me...I have 3 awesome sons...I have a support system that will be by my side every step of the way....and I have tremendous faith that God has a greater plan for Connor, and if I keep that faith, that I will someday see that plan.
I have learned some things from our first go round. I have to take things one day at a time. I want the doctors to tell me exactly how long, exactly what is going to happen, and what to expect....but I know they can't. I need to be honest with my kids and put things in age appropriate terms. Sean who is now 13, completely fell apart when he learned that his brother had cancer again...because he is older and knows what that word can mean. Declan on the other hand told Mrs. Fooks "Hey, my brother is in the hospital and has cancer. I'm bringing him a cake". I'm thankful that he is younger and doesn't quite get it. Connor is also older now than when he was first diagnosed at 3. A 12 year old has a very different perspective and different concerns, questions and worries than a 3 year old. I know that he is worried that his face is looking chubby because of all of the steroids, and that all of his hair is starting to fall out again. His team includes counselors, a psychiatrist, child life specialists, a social worker, and many, many others. There are lots of people here to help us all navigate down this road that we never thought we would be on again.
All of this rambling to say, thank you to all of you, and I love each and every one of you dearly.
(You had to know that me being speechless would not last long.)

Michelle

Wednesday, April 3, 2013 4:06 PM CDT

Yesterday was a sedation day and like most of them, it was a very trying day. Connor came through the day with flying colors. He was in and out of the sedation room in about 90 minutes. He received another bone marrow aspiration, another spinal tap and also he began a new round of chemotherapy.
Everything was going well until last night when he spiked a fever of 102. At that time the nurses went and got him some antibiotics. Shortly after receiving antibiotics he began to get hives all over his head, upper body and face. He started to scratch at himself uncontrollably. We called for the nurse and after a shot of Benadryl, his hives cleared and he passed out. His ordeal for this day would be over. Shortly after 1:30am, my exhaustion would get the best of me and I would join him in sleep.
At 6:30am today the nurses would come back to the room to begin their day. Which in turn begins ours. They say you go to the hospital to get better when you are sick. I guess as long as you aren't there to get rest, you can get cured. It seems as though they come in the room in the middle of the night to wake you up and give you a sleeping pill. With that said, Children's Hospital is absolutely the best. Each and every nurse, doctor, cafe worker and janitor is better than the next. So if we lose a little sleep but Connor gets better, then it's worth it.
Sometime around 11am the doctor came in to give me the results of yesterdays bloodwork, spinal tap, and bone marrow check. He brought some very awesome news. He said that currently the cancer is not growing. So the chemotherapy is working. If you have ever been in a near accident than you may be able to understand the feeling that I had today. You have an intense feeling of anticipation right before you get into that accident, but as you slam on the brakes and turn away, the sense of relief is almost overwhelming as the 2 cars narrowly miss their collision. That was the feeling I had when he told me the cancer, for now, is at bay. I felt like I could just collapse in a chair and finally breathe.
I decided to take advantage of the good news and bring Connor for a little exercise. Along with my sister Susan, my niece Michelle and her boyfriend CJ, we went downstairs and outside to play a little. We did some putting on the outdoor green. And then we just went for a walk to the Starbucks inside the hospital. He was out of bed and walking for about 30 minutes. His stamina is getting better but nowhere near the level he needs it to be.
This week he has chemotherapy every day along with his steroid regimen. I hope that the rest of the week is uneventful. But if it's not, he couldn't be in a better place.

Tuesday, April 2, 2013 2:17 AM EST

Three great days and two off chemotherapy will be abruptly ended this morning. In just 7 hours, Connor will go in for another surgery to have another bone marrow aspiration, another spinal tap, and begin another week of daily chemo treatments.
His surgery is scheduled for 9am on Tuesday. As I write this at 2:00am, I am thinking about Connor. He ate his last food until after surgery at about midnight. His voracious appetite will still be there, but like any surgery, you can't eat after midnight as a precaution. Last night as I laid on the makeshift bed they provide for parents in the hospital room, I was summoned every couple of hours to make food or get milk. Tonight, the job of turning down his requests falls on Michelle. It is her turn at his bedside. I don't envy her this task. But at least he will have his mother by his side to comfort him when his hunger pangs pull on her heart strings. They can comfort one another.
My guess is, it will be easier on him, and us to turn him down for his food requests. When he was 3 or 4 years old and was going through this, it was much harder to explain away to him. Now he understands, but I am sure it is still not going to be easy.
This will be our weekly routine for April. A week of chemo, a couple of days off, and then another surgery to start the process all over again. As I wrote about last, the routines are what make this bearable. It's the only thing we can cling to.
To focus on some positives, Connor has begun his physical therapy everyday. His strength and stamina come and go, but he must maintain that strength and stamina to help him beat this disease once and for all. The nurse de-accessed his port, meaning he was not attached to any IV's or machines. When he was walking down the hall, he looked like every other 12 year old boy. He went to the basketball court outside twice yesterday and did squats, and walked down a flight of stairs. It tired him out a bit, but that's a good thing. He will need to push himself everyday. We look forward to the day when exercise is something he does because he wants to, not because he has to.
I will update tonight after his surgery and let all of you know how he is doing. Thank you again for following him through this. It definitely helps us cope knowing that he has an army of people in his corner rooting him on.
Update: Todays procedures all went great! He was in by 9:30am and called me from the "sleepy room" as he called it when he was a kid. He told me that he was very hungry and was not happy that he couldn't eat all night. He said it kept him up.
He told Michelle to get him pizza sticks for the moment he was out and so there they were, warm and ready for him.
I now have to go to the grocery store to get some very specific items for him and then I will be staying the night tonight. I may have to see if I can find a shovel to just put all of the food he wants into his mouth!
More updates tomorrow as needed.

Sunday, March 31, 2013 8:42 PM CDT

I love these updates. Nothing to report. I was looking back at old posts and I do believe that even though Connor was hospitalized 3 times during his first bout with cancer, he was never in the hospital on a holiday. And now in just 8 days in, he has spent 2 holidays, his birthday and Easter.
Some more good news, today and tomorrow are rest days from the chemotherapy. So no steroids, no chemo, no nothing. This allows his body to recover from the 6 straight days of chemo drugs. They are even not coming to his room as frequently. The nurse just left at 8:45 pm and said that she would not be back until around 4am. So hopefully, if I feed him enough now, he will get some sleep.
The routine of a cancer patient is what a parent clings to. It is the only "normal" thing that we can look at and hold hope that all goes as planned. I have heard that if you want to tell God a joke, tell him your plans. I guess we don't really know what a long term plan is. We thought we knew. We thought we were done with cancer. We thought we would just help others cope with this disease in our own small way. But I guess, God has other plans for us. To be honest, we are ok with that. We don't need to understand, at the end of the day, we will just go along for the ride.
As the weeks continue to pass, my posts will become less frequent on Caring Bridge. I don't want to sign on to just say, "it was a good day". I can do that on Facebook. This blog will someday be in a book on Connor's bookshelf that his kids can read to see how strong and how brave their father is. Most of us just impart what we learn over the course of our lives on our children but we never give them an actual account. This will give Connor's kids that opportunity. I will put every word from every person that has posted on here. Connor truly does want to thank all of you. So do Michelle, Sean, Declan and myself. It means the world to all of us that you take the time out of you daily lives to check in on our little hockey goalie that is just trying to live his life as uneventful as he can. But I think that is Connor's plan, fortunately for Connor, I think God really enjoyed that joke a lot. He has other plans for Connor. I just know it.

Saturday, March 30, 2013 7:28 AM CDT

An open letter to my boys.
Guys, I know this is hard on you. I know that all of the attention is on your brother right now. And I also know that on some level, you guys understand. But I know on so many more levels, you don't.
Let me assure you, It's ok to ask why. It's ok to want to be mad. It's also ok to cry. Real men cry. Real boys that want to become great men allow their emotions to come out. I can tell you that in my lifetime, I watched my father cry just once. It was when your grandparents were in a car accident and we thought your grandmother was going to die. It was such a rare event but I felt as though I really got some insight to my dad. If that is the litmus test then you guys must have some real insight on me. You have seen my tears streaming down my face way too many times.
I was never a kid with sports heroes growing up. I mean sure, who didn't like guys like Tom Seaver, Eddie Giacomin or Phil Simms but heroes, nah. They played a game. Real heroes to me were someone I wanted to be. I never wanted to be a football hero. For me, my heroes were much closer to home. I never strayed too far from there. I looked to my own father and my brothers. They were always hero enough for me. They were who I wanted to grow up and be. They were always amazing role models to me and taught me more about becoming a man then any sports star could. I don't tell them enough (even though i tell them everytime we talk) but I am proud to tell your uncles I love them.
I know that all 3 of you will handle what is going on in our lives differently. And I will also tell you that there isn't really a wrong way to handle it. But some ways are better that others. So with that said, let me give you some guidelines.
1) Don't hold it in. Like I said, real men cry. Allow yourselves that luxury. Find a quiet place and lose it. It's fine.
2) Don't think you have to carry your feelings alone. Talk to someone you can trust with your deepest feelings and thoughts and share them. Your mom and I will take your secrets to the grave with us. Start with us. And if we aren't enough, we'll get you someone.
3) Don't dwell on the negative. Winners find the smallest morsel of hope and hang their hat on that. As a friend has said to me, they love the rain, rain brings the flowers. That's just a better way to see it. Don't you think?
4). Have fun and don't forget to live your life. This is a speed bump in your life. Sure it's a big one, but it's not a dead end. It's designed to make you slow down and appreciate the things around you.
5) Never miss the opportunity to tell the people in you life that you love them. The fabric of our lives is made up of the people we love. Tell them how important they are to you. You will never regret it.
6) Don't live your life with any regrets. Life is too short to have them. Look at the things that don't turn out the way you like as a life lesson and most of all, learn from them.
7) You don't have to be the life of the party, but make sure you show up! Sometimes just attending can be a blast.
8) Be someone people can rely on. Remember boys, a man is only as good as his word. All deals made with you should be made with a handshake. Your word is all you will take with you.
9). Be happy with the gifts you have. Don't live someone's else's life. It's ok to want more, but don't want it so bad you forget to appreciate what you have.
10). Don't ever stop believing in yourself and what you can accomplish. If you believe it, you can achieve it. I have been told I am lucky. I promise, the harder I work, the luckier I have gotten. I have always believed that I could accomplish what I set my mind on.
This short list of 10 items isn't complete. You will add to them as you grow up. The foundation for the 3 of you has been built by your mother and I. We have done the very best we know how to do and we will be there for you as you stumble. And I promise, you will stumble. We all do. But it isn't falling that is the problem. It's when you don't get up. Make yourselves the promise to always get up. No matter what life throws at you. Our attitudes can carry us over the widest crevasse. Always stay positive.
And finally, I will take my own advice. I love you! Never forget that. It's funny how I only had 3 real heroes growing up and in my adult life I have doubled that number. I count the 3 of you as my heroes. The poise that you show me on a daily basis in dealing with our current situation is a wonderful thing for me to see. It gives me some real inner peace knowing that the foundation that has been laid is a strong one. Thank you, each of you, for being the young men you are. I am proud to have you call me dad. And I am proud to call you my sons, my friends, my life.

Friday, March 29, 2013 6:50 PM CDT

Today has been a really great day! After a day like yesterday, Connor really needed to have a great day. It started with Connor waking up and feeling good and wanting to eat some breakfast. He had not eaten since the episode a day earlier.
The breakfast went down smooth and then Connor said he wanted to try to walk the 10 laps around the hospital floor. He only made it once before he got too tired and wanted to go back to his room. About this time the nurses came in and drew some blood and found that his hemoglobin, which had been above 12 before the nosebleed, was now at just above 8. This made him weak and lightheaded. They decided that the platelets he received the day before were not going to be enough and he would need to get 2 units of blood. They said once the units were in he would be full of energy.
About that time, Connor got a visitor. John Gerard, NBC's 11 Alive's Commuter Dude showed up and Connor immediately started to smile. He knows that John got in tough with EJ Hradek on NHL Network and got him to give Connor a shout out for his birthday. John also brought Connor his Thrashers Jersey that was given to him. It was a great gift and is now hanging in his room.
Connor's next big visitor was Reece McPhail and his dad Jeff. Just 4 months ago, Reece was the recipient of one of the bags of hope the Connor delivers to kids suffering with cancer. The irony that Reece is now part of the support system to help Connor beat cancer is not lost on me.
Another visitor today was Dr. Lew. He is one of Connor's oncology doctors. Dr. Lew is also one of the countries best doctors for relapsing cancer patients. We are truly lucky to have him. Another very cool thing about Dr. Lew is the fact that he is a hockey player. Connor has even seen him play in a men's league game. Lets face it, how cool is it that our doctor plays hockey?
And something even cooler is the analogy that the good doctor gave Connor today. As he talked to him, he could tell that even behind the smiles, there is a 12 year old boy that is scared of dying from cancer. Connor understands so much more now then he did when he was first diagnosed. Dr. Lew looked right at him and said, "Connor, you have to treat this like a hockey game. Have you ever let in a bad goal? Well this is just like that. You have to not let it bother you or get in your head. You have to be even more determined to fight and overcome this"
I have to admit. That was when I got it too. It clicked for me. This is an obstacle, not a dead end. Just put your head down and push through it. And if that doesn't work, then try something new, but never give up the fight. It's really funny that the littlest of statement can make it so clear. It just goes to show, this is one more visitor to his room that made it better. I wrote an email today to someone that has reached out in his own way to Connor and told him that he can now put on his résumé that he helped cure cancer. I really mean that. All of you that visit, call, text, or leave messages are all part of the cure. You are all, in your own ways, helping to cure cancer. Even if not on a grand scale, certainly on the scale of a 12 year old boy in Georgia. And for that I am eternally grateful.
The final great thing to come today was the new blocker to go with the pads. It showed up in the mail. Michelle will bring it tomorrow, but Declan was already modeling it today. Connor had another huge smile on his face when I showed him the picture of the blocker.
I think Connor being a goalie is symbolic of the fight against cancer. No one would ever stand in net without the properly outfitting themselves with the right equipment. And they do even better when you put some defense in front of them. Even with all that, sometimes one or two get by. But by no means does that mean the game is over. You focus on how to come up with a better plan, (new chemo regimen). You get a fresh line of defense to support you, (doctors, friends, family and support staff). And then you dedicate yourself to fight as hard as you can to pull out a victory. I am so confident that even though we are losing right now, it's early in the first period. Plenty of game to play. And in the end, we will win. To allow the thought of losing into head is not even an option.

Thursday, March 28, 2013 8:39 PM CDT

The one thing I remember about the first time we went through this was the ups and downs. Some good days, some bad. But I can't say that I remember having days that were both. Well, new diagnosis, new routine I guess. Today was full of both highs and lows.
After the crazy day yesterday, I was really hoping for a smooth day today. And I woke up to just that. Connor was up by 6 and he was in really good spirits. He looked good, he was smiling, no pain. Just what the doctor ordered! At about 8:30 he told me that he thought he wanted to eat, but that he didn't want to get sick so he didn't want to try to eat. I assured him that eating would be the best thing for him and that it would give him strength. We looked through the cereal stock pile and chose the Frosted Flakes. A big bowl for each of us.
While we were eating, Connor reminded me that the doctor wants him to do 10 laps around the cancer floor to build up his energy and to keep him from laying in bed. He said he felt like he needed a shower and then he wanted to take that walk. I was happy to help him accomplish both. We finished our cereal and the nurses came in to check his blood pressure one more time. It has been high for a few days and he is on medicine to regulate it. As the nurse was checking, Connor sneezed. When he sneezed, his nose started to bleed. We took some tissues and tried unsuccessfully to get it to stop. After about 5 minutes, I told the nurse that we should just get him in the shower and I would get it stop in there. She agreed.
I got Connor into the shower at about 9:30. His nose continued to bleed but the water was making him feel great so we just let him bleed a little. After 20 minutes, it hadn't stopped and I was getting a little concerned. I called the nurse and she came in. Se said his platelet count was high so he should clot soon and said it would be ok. At 40 minutes since the nosebleed started I became even more concerned and called the nurse again. She got some clotting drug to give him to help make it stop.
At 1 hour it was pouring out of his nose. He had also apparently swallowed a bunch of blood and this apparently doesn't mix well with Frosted Flakes. He began to vomit uncontrollably until the contents of his stomach were now in the drain of the tub. As you read this and are thinking, "that sounds disgusting", I can promise, you have no idea! It was nasty.
The nurse said they were going to get a unit of platelets to help with the clotting. The problem was, no platelets at CHOA. They had to go and get some from Eggelston Hospital up the road. She assured me, 20 minutes.
When the second hour came and went, and his nose still pouring blood, I was getting even more concerned. The platelets weren't there and the clotting drug that was used seemed to have no effect I needed some action. But remember the feeling of helplessness I spoke about yesterday, well, this is another time when nothing I was doing was working. Pinching the nose, ice pack on the nose, head back. All of the things that worked when my mom or dad did them, had no effect on Connor.
As we approached hour 3 of the nose bleed, Connor was pale and began to feel very dizzy. The nurse estimated that he lost almost a full unit of blood through his nose. The good news was, the platelets had arrived and were at the pharmacy. They were giving his a second, different, clotting drug while we waited. But the way, all of this was happening in the bath tub in his room! Three hours in the shower. I don't know about your house, but my hot water heater has about 15 minutes before we are taking cold showers! Lol
The nurse gave him an item to stick up his nose that looks very familiar to an item used every 28 days on a completely different part of the body. It was really not a very pretty picture, but it finally seemed to work. I hosed off his body and then dried him off.
On his way back to bed he said, "hey dad, I think we should skip those 10 laps. Maybe tomorrow." I told him that we would get them in soon enough and he just smiled.
The platelets worked completely and the 3 hour and 15 minute nosebleed was a thing of the past. At 1:30 we got a text from coach Mark Ardagna. Through one of his contacts with the Pittsburgh Penguins, Mark was able to get Connor a signed Mark Andre Fleury jersey. It was signed "To Connor, Best wishes, Mark Andre Fleury". When I showed him the picture on my phone, his eyes got as big as dinner plates. He was so happy that he asked to call Mark and thank him. We did and Connor got to leave a nice voicemail.
Around this time, Michelle got there with a very special birthday present that Connor has been waiting over a week for. His leg pads, and glove arrived via UPS at the house and Michelle brought them. He lit up like a kid on Christmas morning. I laid the pads on top of his legs and took a picture of him. And just like that, the good day was back. Connor then took pleasure in beating me at the XBox again. I wish this was one of those moments where I could say that I was just letting him win, but I am too competitive to let him and he is too competitive to let anyone let him win. He truly enjoys the thrill of victory.
I left the hospital today about 3:30 and Michelle has the pleasure of sharing the night with our son. By the time I got home at 5:30 there was a wonderful package from one of the parents on Connor's hockey team. It was loaded with the most amazing pot roast, potatoes, green beans, carrots, cookies, iced tea, and even some macaroni and cheese. If we never know anything else, we will know we are loved. And at the end of everyday, whether it is a good day or a bad one, isn't that all anyone really needs? We couldn't get through this the first time without all of the support and love of friends and family, and we won't beat this a second time without all of you. But mark my words, we will beat this. Our record will be 2 - 0 and then we are going to retire.

Wednesday, March 27, 2013 6:59 PM CDT

Oh the joys of chemotherapy. Yesterday finished bad, but today started better. This was however, short lived. Connor's blood pressure spiked and was high most of the day. His pain was back and had migrated to a massive migraine that brought him to tears. The feeling of helplessness can be overwhelming at times. Today was one of those times.
I arrived at the hospital about 2pm to take over for Michelle who spent last night by his side. When I arrived, Connor was crying from the head pain and just looked miserable. At the same time, Michelle was meeting with a social worker to go over options to cover the costs associated with this new 3 year journey we find ourselves on. This month in the hospital will run between $200,000 and $300,000. We have good insurance so that will cover 80%. The good news is we are only responsible for 20%. The bad news is, we are responsible to pay 20%.
Since I have a history of cancer in my family, we purchased an additional cancer protection policy years ago to cover any cancer that I might get. It was only a few dollars more to cover the entire family, so we did it. It's about $20 a month. Now, that $20 is worth, in this case, about $40,000. I wish all my investments turned out like this. Not a bad return. The only reason I write about this is to tell all of you, if you don't have this, go get it. It could really be a life saver. Nearly 60% of all bankruptcies in the US are related to medical bills. It's sad, but true.
After meeting with the social worker, we went back to Connor. He was now writhing in pain with a wash cloth over his head. He was sobbing. My heart was aching for him. His primary oncologist came in, Dr. Bergsagel, Dr. B as he is more commonly referred, stopped in to check on the patient. Feeling helpless and wanted the pain to stop, I asked him to up the morphine so he would pass out. He said that he would and told the nurse to make it happen. He was also concerned with Connor's blood pressure and ordered another type of blood pressure medicine to help him.
I then told the nurse that I wanted him to get up and out of the bed to take a shower. Have you ever spent a day feeling bad laying in bed, and then get up and shower and feel so much better. Well that is what I saw when I looked at him. I had a feeling that he would feel better from a good hot shower. The nurse disagreed with me and told me that he needed to get the drugs that the doctor prescribed, so no shower. And this is when I used my , lets call it "power of persuasion" techniques and introduced her to my more direct side. :-). Hey, he's my son, I can't have him feeling like that all night and then just drug him into a happy place right?
So, after his shower, (I knew she'd see it my way) he came out and was completely refreshed. His blood pressure was lower, but not low enough, his headache gone and his spirits completely lifted. He was smiling and genuinely happy. This of course, makes me happy. He asked if I would play XBox with him and play a new game that one of the amazing hockey parents gave him for his birthday. He played, and I was schooled in the art of, how to kick dads butt in 3 easy lessons. He destroyed me and was laughing the entire time.
We played for about 30 minutes when the nurse came in and said he needed to get a chest X-ray and a sonogram of his kidneys to make sure they were functioning correctly. So off we went. That took an hour and in that time he became exhausted again. He just laid down to go to sleep for the night. I truly love to watch him sleep. I like to watch all of my boys sleep. There is just something about the quiet breath of my boys as I come into their rooms, kiss them on the cheeks and tell them I love them while they sleep. It is a serenity found no where else on earth.
Some other good news today, the spinal tap came back and no cancer in the spinal fluid or brain stem. The cancer is limited to his blood and bone marrow. So the plan is to aggressively attack this like we did last time. I will also lay my head down now to get some rest. I was up till 3:30am last night reading previous journal entries. Not a bad read for those of you that want to go over what i put down on paper 8 years ago. I wanted to see what was in store for Connor next. The good news is, I know how the story ends. Just can't wait to get there!

Tuesday, March 26, 2013 11:59 AM CDT

Tough start to the day. Connor's pain in his back increased as did the pain where his new port was installed. They started giving him a higher dose of Morphine. He began throwing up and needed to take a drug called Zofran to help with nausea. The problem is, he threw that up too. So they are now giving his that through an IV.
We did get his frist months protocol this morning. That is the plan Connor will be on for his chemo. That plan is as follows;
Day 1 - 5 chemo every day
Day 6 - 7 rest
Day 8 chemo
Day 9 - 14 rest
Day 15 - 19 chemo every day
Day 20 - 21 rest
Day 22 chemo
Day 23 - 26 rest
At that point they will check to see what level of cancer is still in his body. The goal is less than 5% of cancer cells in his blood after the 28 days he will have been in the hospital at that point.
A thought just came to me this morning as I watched my son sleep from the morphine he is on. This protocol will be approximately 3 years. He will be 15 when he is done with the cancer treatments if all goes well. Fifteen! That will mean that almost half of his life he has been fighting this disease. I was going through pictures and came across one of Connor blowing out candles on his 4th birthday cake. His hair is thinning from the chemo and his cheeks and face are puffy from the steroids. I can't help but think how unfair this is for him. He really has never known a life without cancer, or the fear of it. That is just wrong on so many levels. I can't tell you how it breaks my heart to not be able to protect him from this.
If someone were to break in my house I have a solution for that. One which I am sure the intruder would not like very much. But this intruder is stealth and comes in a way that I can't protect. That no parent can and it is so frustrating. Think for a moment of when your child skinned a knee, or fell off a swing. Had a cold or fever and you administered medicine until it went away. Do you recall that helplessness? Now magnify that times infinity and you will come close to recognizing how helpless I feel now.
Many of you have told me on Facebook, via text, or private message how strong you think I am. Or how tough I am for dealing so well with this. I will be honest, it's hard. And the tough exterior is masking the tears that I shed everyday for my son. And I am not ashamed to say, I do cry, everyday.
I have sat and prayed and wished and hoped for me to carry this burden and take it from Connor. No 12 year old should have to go through this. But I know that can't be. I know that he will fight this battle and will have his mother, father, and 2 brothers to fight along side of him. Not to mention the Army (I like to think more of a Marine Regiment :-)) of family, friends, acquaintances team mates, coaches, past recipients of Connors Hope bags and countless others that are rooting him on.
I know in my heart that he will beat cancer again. I know in my heart that he knows that. But there are days, and nights when my head will allow other thoughts to creep in. My only hope is that those thoughts do not come too frequently.
I love you Connor. I always have, and I always will. Don't stop fighting!

Sunday, March 25, 2013 11:57 AM CDT

Surgery is over. He was in for about 2 1/2 hours. The surgery was a success but after he came out of surgery his oxygen levels were low so he was put on 100% oxygen to make sure he was breathing correctly. His doctor said his lungs were kind of "fluffy" so he needed to get his breathing cleared up before he could come back to his room. If his breathing didn't get better then he would have had to spend the night in the PICU which is the Pediatric Intensive Care Unit.
He did receive his first dose of chemotherapy today. The first of many doses that he will get over the next 3 years. His port was installed in his upper right chest and all of his meds are now being administered through that. He also had a bone marrow aspiration and a spinal tap. The results of these tests are due back tomorrow. And last but not least, he received 3 platelet transfusions.
For now he has to do some breathing checks every hour for the next 2 days and once his lungs clear he should be good to go. His rosy cheeks are coming back and he is looking more like the Connor we all know and love.
I truly appreciate all of the texts and calls today and I am sorry if I couldn't get back to them all. I know you are genuinely concerned for Connor and his recovery. I promise to try to get the updates on Facebook or on his Caringbridge page as soon as I know something. Www.caringbridge.org/ga/connorpatrick
Each day of this disease brings with it some unknowns and some curve balls that are not expected. As a parent you allow yourself to become complacent with what we perceive to be "normal". I fell prey to this. I truly believed that Connor kicked cancers ass and that he would never have to deal with this again. I allowed myself to put my guard down and blinders up. To my sons I vow to never do that again.
It is time to rest now, for all of us. Sean took today especially hard because as much as they may fight, he truly loves his little brother. Just ask anyone who has ever seen them on the ice together! Don't mess with that goalie if he is on the ice, even if that goalie just dumped you for standing in his crease. (Or even too close to it for that matter. Haha)
Connor told me tell all of you thank you for his birthday wishes. He looks forward to when he is out of here and we can celebrate correctly. Something with a waterpark is what he is thinking. :-). As if I needed hints on what he would like to do.
More updates as they are available tomorrow. Goodnight for now.

Saturday March 24, 2013 11:56 AM CDT

Here we go again. It is hard to believe that a road that I believed we were off, we somehow veered back onto. I guess I should start with how this all came about. So here goes...
About a month ago, Connor began complaining about his back bothering him. I took it to just be growing pains and gave his an adjustment or took him by my office and had one of the doctors adjust him. He would say the adjustments helped and we would just go about our day. I have also noticed some bruising recently but after all, he is 11, bruising is expected right?
So this weekend was to be our last weekend of hockey. Connor's team made up an All Star team of sorts and we are playing an All Star team from Florida. On Thursday, Connor woke up and told us he was not feeling well. He had a bad cough and I decided to tell him to stay home and his mom would get him to the doctor later in the day. As it turns out...strep throat. So no school Thursday or Friday, but we also had a hockey game Friday, so, having my priorities completely straight, I told him, no school, but he could play Friday night. But as it turns out, a bad headache late in the day got the better of him and he said he would rather not play until the Saturday morning game.
So Saturday morning comes and Connor wakes up without a headache, but now his back is hurting. The challenge was, the other goalie couldn't be there and I told Connor that he had to play. He told me that he wanted to sleep on the floor in his room that night so I was complaining to him that he shouldn't have done that before a hockey game. He said he would be able to play so off we went to the rink. But as more and more time went by, his back pain was getting worse. But the time we got to the rink, he was having issues standing. I will be honest, I knew. I knew that the demon that sidelined him had come back in the night while we were all sleeping and had crept into his room and would once again make an attempt to steal his childhood. I didn't want it to be true so I pressed him to get dressed. I wanted so badly to will the cancer away. In my mind, if he dressed and played, then he couldn't possibly have cancer again.
So he did dress, and he did warm ups with his team. All of the coaches on the bench were telling me he shouldn't play. They said he looked like he was in too much pain. But I assured them he was just tight and that once he got loose he would be fine. So they reluctantly agreed to let him start, but as a precaution, they put a second goalie on the bench.
He started the game and played really well. Even making some really amazing saves. His movement was limited but I kept justifying that he was playing well and he needed to be tough. At the end of the 2nd period his coach Dan came to him and told him, "Connor, no need to be a hero. If you are hurt there is no shame in getting off the ice" Connor assured him that he would be ok to play. But he also looked at me right after he said it. I knew that at this point he was playing for me, not for him or his team. I could see the pain was not going away. I asked him, are you able to go, and he said, "I've got nothing left, I gave all I can give today" so I told him to tell the other goalie Jack to go in.
When he got to the bench, his coach told him to go ahead and get off the ice and change. So I opened the door and to the lockers he went.
When he came out, I told him that I would take him tot the ER or to an urgent care to get X-rays and then we would go to The Joint and have the doctor read them and start him on a rehab of his back. We left the rink in Alpharetta and drove to a restaurant for some lunch. Again, I think I knew this was not going to be good and maybe I was delaying the normal life I had just 24 hours ago to not have to go tot the one I have now. The life of a parent of a child with cancer.
After lunch, Michelle took Sean and Declan home and I went to the urgent care with Connor. He was in severe pain and was fighting back tears while we waited. I waited with Connor and my mind raced. Time was defying all natural physics and had slowed to a crawl. At 12:45, Michelle showed up and I talked to her briefly in the lobby. I told her that I had to leave to go to the hockey draft for Declan at the Ice Forum. I gave Connor a hug, told him I loved him and I was gone.
I didn't make it too far from the Urgent care when I started this chat thread with Michelle;
1:57pm Don: "if you would feel better just taking him to Children's Hospital, then just pack up your stuff and go. I am sure we are over thinking this and that we are probably over reacting, but that is what makes us great parents".
2:05pm Michelle: We left and we are going to Scottish Rite.
And that's the thought process. We spoke on the phone a few minutes later and we said we knew the cancer was back. I can't tell you how we knew, but we did. By 2:50pm they were drawing blood and by 4:00pm, we knew for sure, his cancer was back.
Have any of you ever been in a car accident or had an event happen in your life where you can see it so vividly and it goes in slow motion before your eyes. It's as if you can step out of the scene and move around outside of your body. That is how I felt when this happened again. Numb. Angry. Robbed. Once again, cancer made its way into the house and as a father I couldn't do anything to protect my son. It's a feeling of helplessness that can't be described unless you are in this situation.
So, now what...
Well the doctors said that this time, they will treat the cancer much more aggressively. We are still not sure the exact type of cancer. We do know that it is ALL again. (Acute Lymphoblastic Leukemia) but we do not know the precursor type. So we don't know if it is the exact type of cancer from 4 years ago or if this is a new type. The odds of getting this cancer again are .01% percent. Meaning 99.9% of people that are cancer free 5 years from the date of initial diagnosis NEVER get this type of cancer again. I guess we are just REALLY lucky.
As it sits today, it looks like he will go in for surgery on Tuesday to have his port installed in his chest. This will make it easier to give him his chemotherapy drugs. Monday, his birthday, he will probably be getting a spinal tap.
The good news...he is in a great hospital. He has an amazing spirit. And when I gave him permission to just curse or scream or ask why me, he just said, "no dad, I don't want to do that, I just want to beat this." And in case you didn't know Connor, this is just one of the many reasons I love you. You have the strength of 1000 men.

Thursday, February 14, 2008 7:40 PM CST

“This is your son’s last chemo appointment.” These are the words I have looked forward to for over 3 years. I wrote in December about how Connor would have his port accessed in March for the last time. This wasn’t the first time I have been wrong about something but it is the first time I can remember being happy about being wrong.
Today was to be a routine appointment, so much so that Michelle stayed at work and Sean and I took Connor to it. We weren’t expecting anything newsworthy, good or bad. Connor went into the room and was weighed and measured. He was 4’1” tall and 59.1 pounds. A good height and weight for him and it is inline with his normal monthly growth. We did have a scare on February 12th when Connor had a fever of 102 so I had to bring him to the Emergency Room of the Children’s Hospital. They gave him some Rocephin antibiotic and we went home about 4 hours later. His fever has gone down and we are keeping him out of school until next week and that should be the end of it. But other than this incident, today was to be routine.
After the height and weight were completed, the Physicians Assistant came in and said, “This is your son’s last chemo appointment.” To which I replied, “No, he has one more month to go.” I was a little confused because I have had the March 7, 2008 date highlighted in my calendar for 3 years. She looked at the schedule and said, “No, this is it, he finishes his meds on March 7th, but this will be the last time we access his port.” My eyes began to well up, and my knees got weak. I actually had to sit down in the chair. It was here, it was finally here!
When I told Connor that it was his last appointment and that I had been wrong, he lit up with a huge smile. I asked him if he was happy and he said yes. I knew he was, he is always happy, but there was a special smile that he had reserved for this moment, and I was glad to share in that with him.
So the next step is to move away from his current medications. The magic day is still March 7, 2008. That will be the last day Connor takes his pills. The doctor said that on March 8th we should flush any remaining pills down the toilet. He will still need to take his bactrim on the weekends for 6 months and he will still have to be monitored, but he is cancer free. I do think it is fitting that this news comes to us on St. Valentine's Day. It is a day of love, and new beginnings and a day to start with a fresh outlook. I can say I have all of this today. I have never looked forward to my tomorrows more so than today.
After all of my boys had been kissed and tucked in for the night, Connor came back out and asked if he could get a drink. I said sure and asked him to give me a hug. He came right over and jumped up into my chair. He grabbed me around my neck and told me he loved me. I told him that I was so proud of him for all that he has shown me over the past 3 years. I thanked him for making me look at life differently and showing me what is really important and what isn’t. I told him that I look forward to closing this chapter in our lives and that I was excited for the next one that is just beginning. I’m sure most of this went soaring over his head but someday he can look at this journal and understand the emotion that goes into writing it.
Cancer is scary. I have never tried to write and say I wasn’t scared. I have said that I have tried to be strong for everyone, but frankly, I have been scared to death most of the time. When Connor had his fever the other day, my heart sank. I thought that the light at the end of our tunnel was an oncoming train. I am sure that I will always be looking over my shoulder for the hammer to fall. I am a little gun-shy over this event. It has left a lasting impact on me and has changed who I was, and I am sure who I will become.
I have tried to be a good father and mentor to my kids. But I can tell you the biggest lesson I have learned through all of this, is a lesson my dad would tell me when I was growing up, “Make everyday a learning opportunity.” “If you get through today and can say you learned something new, then the day wasn’t wasted.” I have learned so much about who I am as a person. I have gained valuable insight into my children that I think some parents never see. I have watched a 3 year old boy face a challenge that he could in no way comprehend at the time and overcome it. He was faced with a mountain and saw an ant hill. I want that ability for myself. I want the ignorance that youth hands out in heaping cupfuls to spill over onto me so I can face some of my mountains and see those same ant hills.
Being Connor’s dad has made me so proud. It goes beyond the normal feeling of a proud father. I was so very proud to become a first time dad with Sean, when Connor was born I was equally proud as I was with Declan. But the day Connor was diagnosed with cancer, that was the day the teacher became the student. All of my sons have taught me something. Before I became a dad, I thought I would teach them, and yet they continue to teach me everyday. That is why I am so proud to be their dad. I would never wish cancer on any family. But cancer has made us all stronger, individually and together.
I have tried to record this journey as I see it. If someone else has a child with cancer, they may write their journey differently, but like an umpire, I call it as I see it. I started writing it as an open letter to Connor so that he could one day read it back and see what I felt and when I felt it. I know that some of this has turned into the ramblings of a man with a lot on his mind. Over 17,000 times people have logged into this webpage to read my ramblings. I am touched that you would take the time away from your work or your families to do that. But it also speaks to the love a small boy with cancer had bestowed on the people in his life. He has climbed his mountain, he has crossed his oceans, he has won his battle. I can’t wait to see what he does for an encore. I guess that’ll be my second book. To be continued…

Thursday, December 20, 2007 9:58 AM CST

“Your son will have to undergo chemotherapy for three years and two months.” And my heart skipped a beat & I stopped breathing. I thought about how that seemed to be a million years away. It was an eternity that I couldn’t fathom at the time. I had no idea how I would make it for the next 10 minutes, never mind the next 3 years and 2 months. The only thought I had was convincing myself to just breath in and out so I wouldn’t pass out. The devastation of the disease and the length of time Connor would have to undergo this vile treatment was, on some levels, more than I could bear.
Fast forward to yesterday. Connor had another appointment, it was routine as they have all become. There have been no setbacks, nothing to write about. He certainly has had some milestones, but thankfully, they have all been of the sporting nature. Nothing in the cancer family has been of a concern.
As our next milestone approaches, the end of another year, we head into 2008 with great optimism. You see, I can remember about 2 ½ years ago writing about the number of months left in Connor’s treatment. As I look to 2008 I can count the days. He now has less than 100 days to go before he will finish his formal planned treatment. He has a total of 3 appointments and 1 surgery to go through. January will be his last sedation appointment and February & March will be his normal chemotherapy doses. He has to undergo surgery to have the port in his chest removed. But Connor is now playing hockey with Sean and he is the goalie for his team. The season ends in March, so we just have to wait for that to be over. Connor would have it no other way.
I watch each of my 3 sons grow everyday. I see them forming what will eventually become the personalities that they will show to the world. I know millions upon millions of people have had kids and everyone’s kids are “special”. But I really mean it. This experience, as all life experiences do, has molded my sons into special kids. They have a greater understanding of life and how precious it is. They have absolute joy in waking up and being given another day. How many parents can say that about their kids and really mean it.
I know that I haven’t posted anything in awhile so I guess I need to get everyone caught up. As I started out saying, Connor’s appointments have been routine. He is going through a small but steady growth spurt. He is now 4’ tall and 60.3lbs. His counts have all been perfect and his medicine has only been adjusted to compensate for his weight and height gains.
Over the summer, Connor wanted to play football. So we signed him up for a 6 year old league and he thrived. He was the starting tight end and the starting middle line backer. His coach told me that Connor seemed to show no fear in tackling players, even those that were much bigger. But when you face down cancer at 6 years old, what can a running back do to you coming through the hole at full speed that a spinal tap can’t. Not much at all.
HI team went onto win the county championship, only losing one game all season. They scored more than 300 points on their opponents, while the defense held the opposing squads to just 32 points all season, including the playoffs. He really loved the game and he understood it very well.
While he played football, Sean was playing ice hockey. He also thrived at this sport and became the starting goalie for his team. The problem was, Sean is also a very good skater and goal scorer. So there have been times when we could have used a clone to help us win games. And this is where Connor comes in.
When football ended, Connor had no sport to play until Spring so he asked if there was anyway he could join his brothers hockey team. I asked the coach and he said yes. In Connor’s first game, Sean cleared the puck to Connor, he skated up the ice and made a perfect pass to the Center going up the middle. He shot on goal and we scored. In hockey, what Connor did is called and assist. It is the next best thing to scoring a goal. Unfortunately, we lost the game 3 – 2. But then Connor asked if he could play goal during practice. Last night at practice, Connor finally got his chance, and truth be told, he was pretty good. So much so that the coach asked if he could put Connor in goal full time so that Sean could skate out and help us score. His first real game is after the new year but I am sure he will do a great job.
I will wrap up by saying that cancer is an interesting thing. I don’t find myself to be too much of a superstitious person, but I have to say I must have become that way. At our 1st trip to the Lighthouse, we met a family whose son had just finished treatment. They had said all along that they were planning a big party for when it finished, but now they had changed their plans. They were afraid to jinx the cancer back into their son. The mom also said that she wasn’t writing as much on her Caringbridge page, and again, she was afraid to write about the positives, feeling as though the negatives may somehow creep back into their lives. At the time, I thought she was a little crazy for thinking that. Some of you may think I am crazy too for saying that I have been a little gun-shy about writing about all of the positives and the accomplishments so as not to jinx it. Connor is doing great and he continues to do so. He will always have the love and support of his family and friends to help him through the difficult times in his life. All of you have been there when we have reached out for help. We know that cancer is hard on family and friends and we couldn’t have woken up and put smiles on our faces without all of the support we have had. So again, I say thank you for helping us through this journey. It isn’t over yet, but thank you for getting us to where we are today.
P.S. Check out the new pictures! (they should be up soon)

Sunday, May 6, 2007 7:34 PM CDT

UPDATE: Connor’s appointment went OK. His counts were low. His ANC was at 950 and the doctors said Connor is getting more tolerant of the drugs he is getting. Even though the counts were below 1000, he was still able to get his chemo and undergo the spinal tap.
Once again, the drug amounts were changed until we figure out what is going on. Since his counts are all over the place, Connor needs to get weekly testing of his blood at the hospital until there is some normality to it all. He will go back to the hospital this week and we should know something by Friday. ~~~~~
It’s been 6 months since I’ve written on Connor’s webpage. It wasn’t my intention not to write, it just kind of happened. At first I thought, “It’s just 6 weeks.” But then 6 weeks turned into 8 weeks, 8 weeks turned in to 12 and finally I have ended up at 24 weeks without a word on Connor.
Writing about something I am passionate about has always come easy for me. These 4 or 5 paragraphs find their way onto paper (or in this case computer screen) in about 30 minutes. I have found that the real raw emotion comes out if I just write and try not to read what I have written until the thoughts or emotions are gone. That tells me that I have ended the update.
For the last 6 months I have had emotion, but I have lacked the desire. The desire to write has been filled with the desire to spend more time with my family. Things like driving my boys to school everyday or being their ice hockey or soccer coach have replaced the hours spent in front of my computer reading about cancer or looking at the latest research on cures.
The last time I wrote, Connor was 51.8 lbs and 3”9” tall. Today he is 56.8 lbs and 3’ 10 ½” tall. Quite a change. He has also celebrated his birthday and turned 6 years old. His younger brother Declan is now almost 9 months old and Sean is also growing up way too fast and is almost as tall as his mother! Another year or so and he will probably pass her. Not bad for a 2nd grader!
As I was preparing to write this, I was thinking about the last 6 months and how fast they have gone by. Each time I think about the passage of time, I think about March 7, 2008. Besides being my twin nephews, Matthew & Jack birthdays, it will also be Connor’s last day of chemotherapy, provided he has no relapses. That date comes closer and is more of a reality with each passing day. And as I think of that day and the end of this wild ride, I think about going to the Lighthouse cancer camp a year ago.
A girl we met was there with her mom. They explained that her dad couldn’t make it because he only had so many vacation days he was allowed to take every year and he was saving his days to go on his daughters “Make A Wish” trip. I’m not sure where they went on that trip, but the destination isn’t really important. What was important was this father’s desire to spend time with his daughter and his family. I’ve wondered on occasion if that dad ever had any regrets about not taking off to go to Destin for the Lighthouse trip. I wonder if he ever wishes that he would have just told his boss, “Sorry, but my family comes first.” I’ve had these thoughts because over these past 6 months, the 14 year old girl we met in Destin died from her cancer. The outcome of their child beating this disease never came. She will never go to her prom, have her 1st kiss or get married and have kids of her own to worry about.
As parents, we want the best for our kids. No one signs up for sick kids. They are all a blessing and our lives will always be better for the impact our children make on our lives and the lives of others. We hope they grow up, grow old and bury us. No one plans to bury their child. I can’t even begin to imagine the pain. I can’t imagine the impact that would have on siblings or the family as a whole. Hopefully I never have to experience anything like that.
Connor will beat cancer, of this I am convinced. His ability to overcome adversity never ceases to amaze me. Whether it’s playing soccer with kids that are 7 & 8 years old and being as good as or better than ½ of the kids at that age, or when he came to me a few weeks ago and said he wanted to be goalie for Sean’s ice hockey team. Nothing scares him. He is immune to fear and the challenges that are put before him. These are mere obstacles for his eventual success. He is a born leader and explorer and the challenges he has faced so far in just 6 short years are sure to make him an amazing adult.
Over the past 6 months, Connor has been in the hospital for a high fever and extremely low counts. And he has beaten that. His medication doses have all been altered and he is still not on any stable dosing. They changed them again last month and we are now in a waiting game until next Monday when Connor will undergo yet another bone marrow and spinal tap tests. His last counts in April were so low, that he had to go back again last week and have them rechecked. During that visit, the counts were good and hopefully they will stay that way. If they are low again, he will have to delay that sedation appointment.
But even with these setbacks, we are lucky. We still have our son, we still have our family and we still have all of you that come to this website each month to read and leave him notes.
All of this is an invaluable tool in this healing process. The 16,000 plus hits to this webpage are all helping us to heal. And the more people know about childhood cancers and the devastating effects it has on families, the more it helps us to heal.
This month, a magazine called “Our Town” did a story on Connor. (www.ourtownmag.org). They got Connor’s name through the American Cancer Society because of some fundraising that we were involved with. They asked Michelle to write a brief history about Connor and how he got cancer. They liked what she wrote so much that they published her story with only minor revisions. Connor appears on the cover of the magazine with another boy that has cancer. All of these things are part of the healing process, not just for cancer but for life, for family and for friends.
There was a time in my life, before cancer when work or other things came first. Those days are behind me. Now my family will always come first.

Sunday, October 29, 2006 11:37 PM CST

This past weeks appointment was supposed to be a routine appointment. I wrote last month how I have become complacent with these appointments because Connor has done so well. For Connor, this appointment was, as it seems to always be, very routine. His counts were perfect, his weight is the same, as is his height. He will go back next month to get another spinal tap and bone marrow check. This is the normal checks that happen every 3 months for him.
It wasn’t Connor that experienced any difficulty at the hospital, it was me. I was sitting with Connor in the waiting room and I saw a young couple come off the elevator with their young daughter. They looked a bit confused, but there were a few of the hospital staff there to answer their questions. The father had 4 large bags with him of stuffed animals, an obvious gift to the other kids in the hospital that are there to battle their own blood disorders.
He later would tell me that these were gifts from family and friends but there were just too many to keep. The mom walked away and the dad was talking to his daughter. The young artist Hannah Montana came on the tv and the daughter looked at her dad and said very matter of fact, “You know dad, she wears a wig and it looks good.” To which her dad replied, “Who is that?” I jumped in and told the dad that she is very hip in the 4 – 12 age group and he would have to get up on his pop culture. He laughed and asked me, “How long have you been coming here?” “Twenty one months.” I replied. So I asked him, “How about you?” And he said, “This is our first week, she was diagnosed with ALL 2 weeks ago.” My heart sunk and I felt like I was back with Connor in that waiting room for the first time. All of those emotions were right there again. He asked me to tell him Connor’s story. How did we know, do we think we got it early, what’s the prognosis? All of these were questions I can remember asking myself and others 21 months ago.
It was very emotional for me to talk to this father. He was clearly beside himself. We even talked about the line that is always used, “This is not supposed to happen to me!” But it did, and continues to happen to all of us daily. By all of us, I mean all of the parents, siblings, aunts, uncles, extended family and friends. We are all touched by someone with cancer. We are all clearly affected by it. Some of us hide it better than others, but there will always be a pit of anguish in our stomachs. Hidden away for those late night thoughts of what it would be like if cancer hadn’t infiltrated the family. What we would have done differently that would make our lives different today. But these thoughts quickly fade back to the reality of cancer and how it changes us.
This father was lost. His life clearly changed forever. A new path has been chosen for him and like it or not, he is already going down that long road. He was looking for answers from someone that may have a longer history with cancer, but who none the less, has few answers to give. I told him that this struggle is a daily fight, not to be taken lightly. I told him that it will get better and that his weekly trips to the hospital will turn into every 10 days which then turn into every 2 weeks and by month 6 he will look forward to going monthly. I told him that our kids are more resilient than their parents and they will weather this storm far better than we do. I told him to trust in the doctors and the care that they give, but never be afraid to ask questions. All of this I feel is good advice, but I also told him he will have to figure out a lot of this on his own. In time he will.
Under different circumstances, this man and I may have met on a golf course somewhere and had a beer. We may have even become friends and hung out on a Saturday night every now and again. But his Saturdays are booked now. The dinners have been replaced with fast food on the run, chemo treatments and exhaustion. The beer will be traded in for some energy drink that will help the days feel not quite as long. And the golf outings will be spent at the busy Children’s Hospital instead of a quiet course around Atlanta.
I hope he comes to realize that it will calm down. Golf will come back, and even the friends and the occasional beer. But the road that he never intended to turn on has some twists and turns and even more blind curves but eventually it will straighten out. Eventually he will look at his life and think it is normal. Whatever that is.
In the end, I gave him the advice he already knew. Love your kids, everyday. Let them know how they have changed your life. Let them know that this is a ride all of you are on and you will be there to hold there hands on the scary parts for them. If they promise not to tell that you'll be holding their hands when it's scary for you.
We shook hands and wished each other well. Maybe someday I will play golf with him. We can do a foursome of me and Connor and him and his daughter when they are free of cancer. I look forward to that.

Monday, October 2, 2006 7:36 PM CDT

A friend of mine in Germany called me last week to catch up. During the conversation he asked about Connor and said, “He doesn’t still have cancer does he?" I went on to explain to him that this is a 38 month process and that he does indeed still have cancer. He is in month 20 and has 18 months to go, but he does still have it.
After I hung up the phone it occurred to me that I don’t treat Connor like he has cancer. His trips to the doctor have become so routine that I liken them to a visit to his pediatrician for a check up. I have become complacent and more relaxed with his disease. I don’t think that I am at the stage of denial where I tell myself that if I can con myself out of thinking about it, maybe it will just go away, but maybe I’m close to that.
The truth is, his last 3 visits have been extraordinary in that they are so ordinary. His levels have been perfect, his ANC is in line. He continues to grow and gain weight normally. He is a happy and active 5 year old.
He does have a lot going on in his life since I last wrote. He started kindergarten; he is now the proud big brother to his new baby brother Declan who was born on August 18th. He is playing soccer and ice hockey. And the ice hockey is a bitter sweet. Back in January of 2005, Connor was getting ready to start his first season of ice hockey on January 9th. That never happenned because on January 7th, he was diagnosed. So to see him suited up and get out there and play is really heart warming. He is having a blast and I try to have him skate at least 1 extra day a week. But he practices for soccer 3 days, and skates 2, it can be a very tight schedule.
So the quick update for his last appointment, it was perfect. He now weights in at 51.6 pounds and he is 3’9 ½” tall. All of the nurses love to see him and he likes all of them. They really do a great job at Children's Hospital of Atlanta.
His next appointment is on October 26th. It is a normal appointment where he will be given his chemo and sent on his way, provided his counts are good. And the way things have been going, I can only say that I hope and pray they are. Thanks for sticking in there and continually looking for updates. I have always used this site as a therapy session for me. It has been a great way to vent without costing me $200 per hour. And all of you have been a great audience for me to rant to. I will continue to write on here, and I will try to remember that Connor still has a long road ahead. I don’t want to forget that, or become too complacent.
(NEW PICTURES!!!)

Monday, July 17, 2006 6:15 PM CDT

Once again, I must start this out with an apology to all of you that come to this site to check on Connor’s progress. There is really no good excuse. Well it is good in my book, but I am sure it is frustrating to say the least. Some of you have called to check on his condition, while still others have e-mailed. I thank all of you for your questions and concerns.
So, my reason for not writing is simple. It started back in June when Connor went for his treatment and once again, his counts were low. They were only 890 out of a minimum of 1000. All of the other counts were in order, but that ANC count is very frustrating. I know that I have said it is difficult for me to sleep before a treatment. I worry about the counts and pray that his ANC will be at least 1000. So when the counts fall below, it is very heartbreaking. To look at him, you wouldn’t know anything was out of place. So many people will say, “He doesn’t look sick.” But looks don’t matter much with leukemia.
During the meeting with his doctors, they told me that children who’s ANC fluctuates large amounts, the likelihood to have a relapse increases dramatically. I could feel the air being pulled from my lungs and absence of anything intelligent to say was also non existent. I couldn’t respond. I didn’t respond.
After leaving the hospital, I took Connor out to lunch. We sat and had a good time. He was just as happy as he always is. He sure didn’t look sick. :) I kept thinking to myself that this is such an unfair disease. Not just to the person with the illness, but to all of those close to that person. It robs you of happy thoughts. It has the tendency to rob children of time in their youth, and even more it robs them of life itself. I have to admit, the though of a relapse was a very crushing blow. It is a thought that I let get to me, and one that made me not want to update this website.
Move to two weeks later, Connor had another count done and his counts were at 950. Normally his counts are done every month, but when you come up under 1000, you go back in 2 weeks to have it checked again. So once again, teh thought of relapse creeps into my head. When he went back 2 weeks later for his normal one month checkup, his counts were at 1080. As you can see, this is very stressful. And while I can appreciate the frustration of people looking for the update on his progress, I hope you can understand that want to keep this site positive. And I would have made Lenny Bruce blush if I wrote the frustration I was feeling.
Once again, thanks you the thoughts and prayers and hanging in there. The positive reinforcement that comes across in all of the messages make this easier on all of us. Connor’s next appointment is on Wednesday, August 2nd. I will try to update right after he is through.

Monday, May 15, 2006 9:55 PM CDT

Connor’s appointment went very well on Friday. He continues to push over any obstacles in his way. His ANC count had been down to 900, but this week the results came back and they were at 2200. And so goes the up and down roller coaster life of a child with cancer. You just have to hope for more ups than downs and we have been very lucky in that regard.
His weight is still going up and he is still growing like a weed. He weighed in at 50.2 pounds and was 3’8” tall. He will grow up to be a linebacker someday f he keeps growing at that pace.
The doctors said that the hair loss is just temporary and it shouldn’t fall out much more than it already has. It is more of an annoyance than anything else. Just a few extra minutes at bath time to clean up the loss of hair in the tub, or blowing off his pillow in the morning. He said he doesn’t want to shave it and he just wants to wait and see how much comes out.
Another thing that he’s been dealing with is the chemo rash on his chin. This rash started about 3 months ago and has gotten worse over time. However about a week ago it really started to get bad and it was all over his face. We had some concerns and told the doctors. After examining him it was determined that the chin was a chemo rash, the other was probably poison ivy! It’s always something!
Sean and Connor like to walk in the woods behind the house. Apparently 2 weekends ago, they got into some poison ivy and Connor got the rash pretty bad on his face. Sean wasn’t affected at all, so I guess he takes after me since I am not allergic to it.
Another big event for the boys was the finish of soccer season. Each boy got a trophy on Saturday after their final game and they were very happy. Connor was beaming with pride about his. He was holding it up and had a huge smile on his face. He even called some of his aunts and uncles and told them how hard he had to work to get it. He has placed it on his dresser with some of his other awards.
I also need to thank all of those that help to raise $781 towards the Relay for Life cause that my cousin walked in. It was a huge success and her team raised over $7000 towards cancer research. Every little bit helps.
June 8th is Connor’s next appointment. It will be a sedation appointment and he will get another bone marrow check and spinal tap. I will update after that appointment.

Sunday, April 16, 2006 11:13 AM CDT

UPDATE: I know I said I would follow up last week after Connor's follow up appointment, but when the news is less than what I want, I don't always do it.
Connor's counts were at 900, that was 70 points lower than they were 2 weeks earlier. Also, his hair is falling out again in large chunks. On the bright side, Connor says "I don't care about losing my hair. I know you'll shave your head if I do!"
The doctors say the hair loss isn't unusual and he shouldn't lose it all, and they say we will monitor his counts when he goes back this Friday.
I will update the site again this weekend and let everyone know how his counts look. And one more thing, my cousin has added Connor to her site but is still falling 500 dollars short. Her walk is this weekend. Lets get her over the top and get that $500 to her by Friday of this week.
Another month has flown by and this past Friday was Connor’s last appointment. The night before his chemotherapy is always particularly hard. I can never sleep. I guess it is nervous anticipation of the event. Connor never has any trouble falling asleep, but I always do. I also had a doctor’s appointment on Friday, so Michelle got to take him for this visit.
He had a late morning appointment which is always good. He gets to sleep in a bit. His idea of sleeping in is about 8am but it is better than 6am. Since Friday was a holiday, Sean got to go with him. The appointment was very routine. They took his height and weight and drew his labs. Sean and Connor went into the lab room where they got to look at Connor’s blood under the microscope. They got to see the red and white cells and the platelets. They are amazed that red cells are actually purple and white cells aren’t white either. But they thought it was cool to look at.
Even though Connor’s isn’t count dependant, they still want to keep an eye on his ANC counts. And unfortunately, this week they were low. He is supposed to maintain at least 1000, but this week he was at 970. Because of this low number, he has to go back in 2 weeks to get checked again to make sure the counts are back where they need to be. The steroids he started on Friday should help get them elevated. But once again, this disease just isn’t predictable.
I have said many times before that this web site is a great conduit for me to express myself. And it is also a great conduit for people to get a glimpse into Connor’s cancer and the daily effect it has on him and his family. But the other great thing about this website is the people that sign on and read. Recently, a 2nd cousin of mine, that I hadn’t spoken to in 20 years, found out about Connor and posted a note. We have talked a few times and she is raising her 2 daughters in Virginia. As it turns out, one of the things she has been doing for about 6 years is walking in a local event in Virginia to help find a cure for cancer. As it turns out, that event is coming up very shortly. I went to the link that she has and saw that she is trying to raise $300 for cancer research. This is such a noble cause and I told her that I didn’t think that her goals were set high enough and asked that she raise it to $1000. She took on my request and now I turn it over to you. Please go to the link below and donate what you can. http://www.acsevents.org/relay/caroline/bergenaschgirls?faf=1&e=557514679 (cut and paste if it doesn’t link you)
We are rapidly approaching 13000 hits on this website. I think that with all of the support you have shown in the past we can reach that goal. Last year, we raised over $7000 dollars for the Leukemia & Lymphoma Society. It was a remarkable feat and I am sure we can do it again. Thank you for checking on Connor and for checking on us. It is the support of our friends and family that make this bearable.

Wednesday, April 5, 2006 10:41 PM CDT

(NEW PICTURES TODAY) After some long deliberation I felt as though a daily journal with a rundown of the days activities were the best way to approach this Lighthouse camp. As most of you are aware, I had some trepidation about coming to this. I felt as though it may bring me down. From an emotional standpoint, I think Michelle and I have handled this as best we can. We are working with the tools we have, and that is the best we can do.
Sunday - From the moment we got here I have been impressed. They assigned us to another family that caters to our every need. They look out for the kids when we go to the meetings to discuss our own cancers stories and they watch them while they are in the pool, they even get their meals for them. The family is the Neibur’s. If you are a tennis fan, you may know Gary Neibur. He was a professional tennis player that is now involved in event planning at things like the Masters, Wimbledon, and a few other major sporting events. He has a wonderful wife named Teresa, and 3 beautiful girls. They are down here as volunteers for the Lighthouse and while their kids do not have cancer, they have a tremendous compassion and understanding of just how stressful this can be.
I have had my moments during Connor’s cancer where I have broken down, however, each of those moments has never really been shared with anyone. Even though I write on this journal, I can’t express the raw emotion that this brings out. And while all of the love and support has been exceptional I have never spoken about Connor’s cancer in depth. Not even with Michelle. So when they told us that on our first day we were going to a “Common Grounds” meeting where we would all share our stories I was skeptical.
There are 10 sets of parents at this retreat and one by one they all began to tell their stories of their children and how cancer has affected their lives. Only 4 sets of parents children are affected with Leukemia, the rest are brain tumors and other very serious cancers. I found myself in awe of these moms and dads whose kids are much sicker than Connor and yet they have the strength to get through each day. After about the 4th couple spoke, a couple whose child also has ALL began to speak. They spoke of how they went through the treatments for 3 years and 2 months, and how they were ready to move on. That’s when the cancer came back. Their son is now going through his second time of chemotherapy. There were no dry eyes in the house.
We spoke of the stories of poor bedside manner, like the time a nurse told us “Connor is too cute to have cancer!” or “Friday is such as bad day to get cancer!” as if there was a good day. We spoke of family and friends and our internal support groups that make it possible to get through our days. But mostly we spoke of the kids. We spoke of their resiliency to their disease, even those kids that the outlook may not be as bright as others. How each of them accepts their cards that they’ve been dealt and plays the hand.
We spoke of the future and looking towards it. Moving past any negative effects that may have touched our lives and realizing we are better for having the experience, but also better to move on.
I spoke of my father and his influence on my life and how I wished silently that he were still here to talk to or share a beer with.
Mostly we just got to watch our boys play, have fun, sing songs and just forget, albeit for a short time, that we are a family with cancer.
Monday – Today started out with a prayer service on the beach. It was really amazing because just as the preacher was talking about God’s light, the clouds broke and the sun shined through on us. It was a neat thing to be a part of. From there we moved onto beach Olympics. This is something where they do a bunch of games on the beach and everyone participates. It is a lot of fun and the kids, and parents really have a good time.
There was another session of the “Common Grounds” today and once again, it was emotional and very moving. These last about 2 hours and it really leaves you drained when you’re done, but it is also satisfying at the same time.
Then the ladies had a spa day where the volunteers pampered them with manicures, pedicures and facials. And the guys went to the beach to play some more. I took the boys to Home Depot during this time because there is a talent show tomorrow and the boys want to break boards for their portion of it.
All of us went to dinner tonight as a group. The volunteers will look after the boys and keep them occupied until we returned at 9pm.
Dinner was at a nice seafood restaurant and the company was awesome. I sat next to and talked to a man named “Rooster” whose son has ALL and went into relapse during his treatments. Our boys are the same age and it was a little scary to hear about how the treatments were on their way to being completed, but his cancer returned. If not for his faith in God and his ability to maintain his sanity he may have lost it, but that faith moved the mountains out of his way to a greater peace and understanding.
Tuesday – On the way back to the house last night, Michelle and I stopped at a store to get “Skim Boards” for the boys. These are small wooded boards that skim on the surface and the boys ride them like small surf boards. When we gave them to the boys they were very excited and wanted to use them immediately. But we had a few things to get through first.
We started our day on the beach with a morning prayer for about 20 minutes and some singing. Then we went back to the “Common Grounds” place to share more stories about our children. They had us pick 2 pictures from magazine clippings and we had to say why we picked them. Once again, there were a full range of emotions going through the room. This went on for about 2 hours until we all went.
After that was over we went back to the beach for more Beach Olympics. This would be the final day of competition. The boys were a little more preoccupied with their skim boards than the Olympics, but they managed to do both. We had a final tug of War and some other fun things that we all got involved in, and then it was free time for the afternoon.
The boys spent from 11am until about 5pm with their new friend AJ and the 3 of them were just skimming away the afternoon. AJ is a young man that was diagnosed a little over 3 years ago with ALL. He took his last chemo in January and is moving on with his life as a survivor. When I talked to his mom, she is reluctant to have a big blow out, as to not jinx the cancer back. I can understand that. It seems as though “relapse” is now just as dirty of a word as I can think of.
After dinner we had a talent show and it was really awesome. There were a lot of different acts and everyone did great. The boys put their karate skills to use and broke a few boards and I even got up and sang a song. Everyone had a blast.
Wednesday – It is always hard to leave something that is so awesome. I had to leave a bit early because of a business trip I am taking in Central Florida. I left Michelle and the boys at the camp to watch the final slide slow and to say the goodbyes. It was hard to leave but I knew that the weekend had to end.
As I sit and write this, I can honestly say that the weekend had the desired effect. For just a few days in a week we all forgot about cancer and had fun. It wasn’t about us as individuals, but about our families. It was about reconnecting and laughing and talking. And while we did talk about cancer, it was the ability to talk to people that have had some similar experiences. There was no explanation needed, just raw emotion and candor at its best.
I came to realize that I have never opened up in the past 15 months Connor’s cancer. I’m not really sure why, but while I have written about it on this web site, I have never spoken to anyone in depth. I am not sure if I will be out shouting it from the rooftops from here on out, but I am sure that when the time comes, I will be able to do it again.
Sean summed it up to me after the vacation was over when he said, “This is the best vacation ever! And when Connor is better, I want to come back and help these other families.” He is right on the money. I think that sounds like a good plan for our future summer breaks.
Thanks for checking in on us again, and thanks for all of the prayers. Please send this webpage on to anyone that you think may want to read about Connor. He inspires me, and I hope that he may inspire someone out there reading this too.
I have added a new web page to the bottom. It is www.lighthousefamilyretreat.org . Behind this site are the people that made this past weekend possible. They do 8 retreats a year and that can be expensive and time consuming. They are always looking for donations of time and money. If you can help, please click on the link and do what you can.

Saturday, March 25, 2006 9:17 PM CST

Today is Connor’s birthday. I have put up several new pictures for all of you to look at. He has been talking about this day for what seems to be forever. He couldn’t wait to turn five. And like I have said so many times before, it is another milestone that has passed that makes me understand that his cancer is also passing by.
I have talked to my mom and she has said how fast we all grew up. It is hard to believe that we can remember the day our kids are born and other milestones, but we forget some of those things in between. I won’t be much better than most parents. I will still forget some of the things he will do over the years. But I won’t forget the lives he is touching. I won’t forget the truly amazing impact he is having on my life. Don’t get me wrong, I have 2 amazing kids, and I do not want to diminish what Sean brings to my life at all. He is my first born son, he is the one that will look after his brother when he isn’t having a good day. When Connor does something bad and gets punished, it is Sean that goes to him and comforts him. They are what I want to be when I grow up.
For Connor’s 5th birthday, he wanted to have a Sponge Bob Square Pants theme. So we hired a big Astro Jump and set it up in the backyard. They had a blast on this thing. It had 5 separate chambers with a slide, obstacle course, basketball hoop, a jump area, and a climbing area. There were almost 20 kids at Connor’s party and playing on this huge thing. And before anyone got there, I was in it too. It was purely to make sure it was safe for the kids. :)
The past two weeks have been a challenging time, there has been a lot going on. A lot of travel for me and a lot of things in general happening. Sometimes if there wasn’t some type of chaos going on, I would have to wonder if it was normal or not. Just 14 months ago, no one was sure if Connor would have a 4th birthday, never mind a 5th birthday. So as one more milestone goes into the books, I am glad that he was surrounded by the people that love him the most and the people that care enough about him to follow his progress on this webpage.
The Lighthouse is coming up next week and both boys are excited about the trip. I am sure that I will have more pictures and more to talk about when that is over. Thanks again for checking in. I hope that you can leave Connor a quick note while you’re on here, even if you have never left one before, he likes when I read the notes to him. I am looking forward to cancers halfway mark. On July 7th, 2006 he wll be at the halfway mark. Another milestone on my calendar, and one that will bear remembering when it passes.

Tuesday, March 14, 2006 2:18 PM CST

This has been a very busy month for Connor. He has had a lot going on and I will use this opportunity to tell you about it. First of all, Connor and Sean have both started soccer. Connor has talked about this for as long as I can remember. He has wanted to play since Sean took up the sport last year, but he couldn’t play because he was too young. But there is nothing stopping him now. He went out the first game and played really well, but he didn’t score, last Saturday, he did score his first goal and he was so excited, I could just see it in his face.
He is also still doing karate every week. He tested up and he is now a yellow belt. After his soccer game on Saturday, we rushed him and Sean over to the dojo to compete in his first competition. He entered 3 events, forms, board breaking, and sparring. He was the only yellow belt to enter the contest so I knew he would have to spar someone who was more advanced than him.
In the forms, he did “8 kinds of kicks”. This is something that he practices at home and with his brother and he is pretty good at it. He went up and took 2nd place! In the board breaking he was up against 4 other kids. He talked to his coach before he went up and was told not to do the normal kicks and punches if he wanted to do good, so while all of the other kids went up and did 3 normal breaks, Connor went up and did 2 normal breaks, and his 3rd break was a sliding side kick. It was really cool. And with that break, he secured first place and a gold medal. He was really proud, and when they announced his first place, his smiling went ear to ear. His 3rd event was sparring and I was right, he would have to fight someone more advanced than him. The boy he fought was a green belt and 7 years old. A green belt is 2 belts higher than Connor and some quick math tells you that the boy was 3 years older than him! Connor used every move he has ever been taught, but he lost the match 9 to zero. When it was over Sean said "You lost!" Connor looked at me and said, "It's OK that I lost dad because I tried as hard as I could." I think it is awesome to hear the things he has been taught in the 4 years of his life come out of his mouth and to know he meant what he said. This is just one more time that Connor has shown me his maturity is well beyond his years.
Just the other day we were called by the “Lighthouse Retreat” that we were accepted at the retreat for a 4 day cancer camp. My understanding of this camp is that it puts children together with other kids with cancers and their parents to understand the disease and to show that their can be hope inside the moments of despair. It will give Sean a chance to see other kids and talk to other kids about having siblings with cancer and it will give Michelle and I a chance to talk to other parents and see how they cope. I am not usually a therapy type of person, but if it helps Connor or Sean than it is worth the trip. This camp is located in Seaside, Florida up in the panhandle and it is at the beach so the kids will be sure to have a great time.
Another interesting part about this past month was yesterday morning while getting ready to leave for the hospital. I was alone with Sean in the kitchen when he asked me, “Dad, how do you get cancer?” Sean hasn’t asked me about the cancer for a long time, so I wanted to make sure that if he had questions, that I gave him a very good answer that he could understand. This is one of those dad moments that you hope you come out with something that he will remember and he will think I am the smartest guy in the world. I thought about it for a second and that is when I realized, I didn’t have a clue how to respond. At that moment, Connor walked in and I said to Connor, “Sean would like to know how you get cancer.” To which Connor responded, “Oh that’s easy, you have red blood cells and white blood cells in your body and the white blood cells fight infection. I have too many white cells so they are making me get more infections.” And that quick I realized that Connor has a better grip on this than anyone in the house. Sean seemed to understand and was able to move on with his morning, but once again, I was in awe of a 4 year old.
Since Connor seems to have such a grasp on his disease, I thought it was appropriate to take a few picture of him as he was getting ready to have his umpteenth spinal tap and bone marrow check. I have taken those pictures with my phone and they are on the site. As you can see, he is very content, and he is very relaxed. His calmness makes it easier for us to deal with it, but not easy.
His counts were perfect again. He has stayed the same in his height at 3’ 8” tall and he has only gained .3 pounds and is now 46.9lbs. He is growing normally and he is progressing very well. He is still the one all of the nurses look forward to seeing because they all say how he is their best patient, he never cries and he just wants to smile and get this over with. All of his results were good and since he is gaining a little bit of weight, his chemo doses were increased to keep up with his growth.
He will have another appointment on April 14th. This will be a normal counts and chemo appointment. I will update the site when that appointment occurs or after we get back from the Lighthouse Retreat. Thanks again for checking on Connor, we sat and read the notes again this weekend. He thinks he is something special since he has his own webpage and all of you write to him. I have to agree.

Friday, February 10, 2006 10:42 AM CST

(NEW PICTURE!!!) Another good day at the hospital!! Connor’s counts were all “perfect” according to his doctor. Everything seems to be progressing well. Including his height and weight. He is currently 46.6 pounds and 3”8” tall. Not bad for a hulking 4 year old!!
Every now and again, I am reminded of just how serious this disease is. While everything did go well. The doctor told me about a mom that started a program after her son died from ALL. It makes me realize that you are never really out of the woods, and that there are many twists and turns. He also cautioned about being too complacent and that Connor will indeed be hospitalized over the course of the next 2 years. He didn’t say why, but he said that it does happen to just about every patient. That’s when I told him that Connor isn’t every patient. So far we have beaten the odds on everything. He’s only been hospitalized 2 times, he’s not needed bone marrow, his counts drive me nuts, but always come back in line just in time. So I guess he doesn’t fit into the big picture of what others with ALL are facing. Only from a symptom point of view, but he seems to be beating it better than most. I know that the prayers of the over 12,000 hits from people on this web site are to thank for that.
Next Friday night, Connor has his first outdoor sporting event since being diagnosed. He will begin his first year of soccer with a practice next Friday night. Sean begins his practice soon too. He has wanted to play soccer for the past year, and baseball too, but we decided to keep him involved in indoor sports until we had a better understanding of his cancer. It would appear that nothing can hold him back. This past Tuesday, Connor got his yellow belt in karate. He told me that he worked real hard to get it. I know that he did. I will be sure to put new pictures up from soccer and keep all of you as up to date as I can.
His next appointment is on March 13th and it is a sedation appointment. Another bone marrow and spinal tap test. Typically a 4 – 5 hour test. I will update again after that test, or if there is any other news, I will update on that.

Thursday, January 12, 2006 6:40 PM CST

Today was Connor’s first appointment of the new year. The past 2 appointments have been a little concerning due his ANC count. It has been below 1000 and as most of you know that is not good. This week his ANC was over 1400! It is so crazy to have these ups and downs. It affects every part of your day, and it can affect every relationship you have. It is a roller coaster that I wish I could get off. I am sure that some of the people that deal with me on a daily basis wish I was off too! Deep down I know that there is understanding in all of this. Surely you can see the frustration in my writings at certain times, while in other entries it seems to be very smooth sailing. Low ANC counts really drive me nuts!
Connors next appointment is on February 10th. It is a normal appointment, he will have his counts checked and get vinchristine through his port. The doctor said that Connor is progressing well, but that he is bound to have some setbacks. They continue to talk about the setbacks, but I have to say I am glad that there have been only a few minor glitches. I guess the up and down ANC counts are par for the course, but this is a course I’ve never played. Eventually I am sure I will find all of the hazards but it is a daily struggle to try and avoid them.

Saturday, January 7, 2006 4:51 PM CST

One year in any life can fly by, but this past 12 months has been a bit of an anomaly. The first 4 months were the slowest, but the last 8 have gone pretty fast. On this day 12 months ago, the life of my son was changed with just 4 words. “Your son has cancer”. He has been the toughest little boy I have ever seen. A friend of mine told me that he has known no other lifestyle, so he handles it very well. I think she is right. But I write this journal from my perspective, and for him to read when he is older. So as I reflect on this past year, I thought I would tell Connor how I felt about the diagnosis from a dad’s perspective. Let’s face it, men and women react to this very differently, and I can only share how it made me feel.
I’m not sure what the ratio of men vs. women that read this journal is, but I would venture a guess to be 90omen. So I hope this adds some insight for all of you. Any men that read this should know right away what this is saying. I found some perspective on curesearch.org and I couldn’t say it better.
I suppose that the general Dad experience is one of anger and helplessness. Dads are supposed to be the protectors of their families. Burglars, thieves, cutthroats, and murderers lurk outside the gate, and will be dealt with summarily if they chance to invade our kingdoms. There is a powerful fantasy of defending the castle against all comers, even laying down our lives to keep our children safe.
A diagnosis of a grave illness is sneaky, however. A spy, an assassin that has entered our lives through the sewer grate. Suddenly we realize that the prince is held captive in his own room, with a knife at his throat, and we are standing helplessly, stupidly, in the courtyard with useless weapons in our hands.
At the moment of our sons diagnosis, we set out on different journeys to rescue our child. More like two different takes on the same mission, two complementary approaches. For Mom, it was about comfort. Make our baby comfortable, make our family comfortable, share feelings and insights with visitors, things she was willing to do 24 hours a day at the expense of her own health. For me, it was about facts. What, exactly, is the diagnosis? What are the odds of complete recovery? What will be the results of the surgery? Where will we stay? What about the insurance people? Who will feed the dog? Interestingly, the doctors told us not to read books. Current therapy and practice are advancing so rapidly, that a book is far out of date the day it’s published. So I went to the internet at the hospital and read current periodicals and extracts. Good news. We asked tough questions at the doctor's conferences. Good numbers. I began this webpage so that we wouldn't have to tell the same stories over and over. Good work.
Meanwhile, my wife sat by our son’s bedside and watched him sleep. She sat out in the hallway and talked to visitors, nurses, doctors, strangers, patients, janitors, technicians, maintenance men, pizza delivery guys until she was exhausted, and I knew we had to have a plan.

1. Analyze your strengths. Michelle was the caregiver, I was the utility player. When she would monitor our sons daily fight, I stayed home and played Mom to our other son.
2. Allow your friends to help. When someone asks you what you need, tell them. Our friends helped out with meals, mowed our lawn, cleaned our house, cared for our other child.
3. Try to keep the good and ignore the bad. While Mom was gone to the hospital, the other child slept with me, had dinner with me, watched TV with me, and generally treated me with care. It was our job to be as normal and happy as possible.
4. Try to get some rest. Once we had established our plan, it had to produce good results for our son. I told her that she was allowed to cry when she was not in his presence, but she needed to be healthy and cheerful whenever she went in the room. Personal care is necessary for the patient's benefit. Take time off to sleep, shower, eat, and return with a good attitude.
5. Accept the reality of your new life. One of the strangest results of our new routine was an incredible sense of peace for me. On the scale of values, weeds and bills sank to an all time low, and time at the hospital rose right to the top. At my most helpless, I found the strongest sense of God's presence. In my weakness, my only weapon was my time, my patience, and my support. As a man, it was humbling, as a father, it was transforming.
I don't mean to take away from the pain and difficulty of this experience, it was both painful and difficult. But I do believe that while this illness can destroy a family, it also has the potential to build one too. I think the bottom line rests with Dad. Dad's job as the warrior is to lay down his wants and desires, to fight with himself, and make the noblest sacrifice of his time so that his family might survive. In the end, it may be the best thing that you have ever done.

Tuesday, December 27, 2005 1:34 AM CST

UPDATE AT BOTTOM & NEW PICTURES;
On the 15th of December, Connor went in for his sedation appointment and he was in really great spirits. His doctors are encouraged by his progress, but they have said we have to prepare ourselves for any setbacks that may come.
Since he isn’t count dependant anymore, getting the treatment isn’t an issue. We have to stay more focused on his ANC count to make sure it doesn’t fall below 1000. Then every 30 days we just bring him back for his blood work, his chemo, and we can go on with the day. Every three months, he has a sedation appointment to get his bone marrow and spinal fluids checked, and again, we are outta there for a month. This all sounds very routine. And I have become complacent at times with this disease. I almost forget that he has cancer until I look at the calendar and realize that he has another appointment.
This visit went like all of the others. Sign in, check vital signs, get height, weight and the rest of it, and then wait. (By the way, he is now up to 44.9lbs and 3’ 7” tall)
When the nurse came in after the blood work was done, she told us that Connor’s ANC was at 820. This is much lower than he has been, and certainly below the recommended 1000 level. She also said that because he is starting to gain and hold on to so much weight, we have to increase his doses of some of the medicines. The routine I spoke about has now been altered just a bit. Since his ANC is much lower, he has to go back to the hospital on Wednesday of this week to have his blood drawn. They will run the tests and see if the ANC is up, if it isn’t, they will have to make other modifications to his meds. So much for the routine. Just when you think you have this figured out, the rules are altered, albeit slightly, but just enough to frustrate the heck out of you.
With the passing of Christmas I am reminded of the beginning of what I thought was the end of my sons life. At this time last year, we were in NJ having lunch with one of my brother Kevin, my sister Pat and some of the nieces and nephews. Connor slipped off his chair and hit his chin on the table. Almost instantly he had a bruise the size of a half dollar, and it was jet black. He had also been running a fever that week. Michelle took him to a clinic on Staten Island and the nurse du jour gave him penicillin. For some reason, when I was speaking to Michelle, I told her that I thought he had leukemia. I don’t remember why I thought it, but I did. We went online to see what we could find out, and he had all of the symptoms. A couple of weeks later, those fears would be realized when the hematologist said, “Your son has cancer”. Those 4 words have changed everything that I ever knew or believed. They confused me and frustrated me. And while I have a better understanding of the disease, it still has those effects on me to this day.
This year we found ourselves in NY/NJ again. But there was little talk of cancer, and more about enjoying the time with our families. For the first time since my father’s death in 1999, all of my mother, brothers, sisters, nieces, nephews, and even my great niece and great nephew were at the same place at the same time. There were more than 30 people there. We all met at Kevin’s house for an impromptu birthday party / family reunion.
As days turn to weeks, weeks into years, I know it gets hard to fit schedules so we can all see one another, but I am glad for my kids, and for me that everyone made the time. Not really sure who had the idea to do it, but I am glad that you did.
In other journal notes, I have talked about milestones. I have said it over and over again, this entire disease is about them. In 12 days it will be one year since the diagnoses. Connor is almost 1/3rd of the way through this. It’s truly hard to believe that so much time has passed. Some days have been longer than others, but still it’s a full year. In 2 years, 2 months and 12 days, his port will come out of his chest, and life can get into the routine of soccer and ice hockey, instead of doctors and hospitals. That’s a routine I want to get out of.
I asked Connor tonight how he was doing with his cancer and if he had any questions, he answered, “no.” Then he said, “But you do pray for me right dad?” And I told him “Yes son, everyday.”
On that note, I ask all of you the same question Connor asked of me; Do you pray for Connor? I hope that you can tell me, “Everyday.”
I have posted new pictures and I will be updating on Wednesday with the 2 week ANC counts. I want to wish all of you that read this webpage and all of your families and friends a very happy and healthy 2006.
The results of Connor's mid month blood work at back. His counts are at 950. Certainly higher than they were, but not high enough. His next appointment is on Thursday, January 19th. We will get more blood work and test to see if the ANC has gone over the 1000 mark.

Tuesday, December 27, 2005 1:34 AM CST

On the 15th of December, Connor went in for his sedation appointment and he was in really great spirits. His doctors are encouraged by his progress, but they have said we have to prepare ourselves for any setbacks that may come.
Since he isn’t count dependant anymore, getting the treatment isn’t an issue. We have to stay more focused on his ANC count to make sure it doesn’t fall below 1000. Then every 30 days we just bring him back for his blood work, his chemo, and we can go on with the day. Every three months, he has a sedation appointment to get his bone marrow and spinal fluids checked, and again, we are outta there for a month. This all sounds very routine. And I have become complacent at times with this disease. I almost forget that he has cancer until I look at the calendar and realize that he has another appointment.
This visit went like all of the others. Sign in, check vital signs, get height, weight and the rest of it, and then wait. (By the way, he is now up to 44.9lbs and 3’ 7” tall)
When the nurse came in after the blood work was done, she told us that Connor’s ANC was at 820. This is much lower than he has been, and certainly below the recommended 1000 level. She also said that because he is starting to gain and hold on to so much weight, we have to increase his doses of some of the medicines. The routine I spoke about has now been altered just a bit. Since his ANC is much lower, he has to go back to the hospital on Wednesday of this week to have his blood drawn. They will run the tests and see if the ANC is up, if it isn’t, they will have to make other modifications to his meds. So much for the routine. Just when you think you have this figured out, the rules are altered, albeit slightly, but just enough to frustrate the heck out of you.
With the passing of Christmas I am reminded of the beginning of what I thought was the end of my sons life. At this time last year, we were in NJ having lunch with one of my brother Kevin, my sister Pat and some of the nieces and nephews. Connor slipped off his chair and hit his chin on the table. Almost instantly he had a bruise the size of a half dollar, and it was jet black. He had also been running a fever that week. Michelle took him to a clinic on Staten Island and the nurse du jour gave him penicillin. For some reason, when I was speaking to Michelle, I told her that I thought he had leukemia. I don’t remember why I thought it, but I did. We went online to see what we could find out, and he had all of the symptoms. A couple of weeks later, those fears would be realized when the hematologist said, “Your son has cancer”. Those 4 words have changed everything that I ever knew or believed. They confused me and frustrated me. And while I have a better understanding of the disease, it still has those effects on me to this day.
This year we found ourselves in NY/NJ again. But there was little talk of cancer, and more about enjoying the time with our families. For the first time since my father’s death in 1999, all of my mother, brothers, sisters, nieces, nephews, and even my great niece and great nephew were at the same place at the same time. There were more than 30 people there. We all met at Kevin’s house for an impromptu birthday party / family reunion.
As days turn to weeks, weeks into years, I know it gets hard to fit schedules so we can all see one another, but I am glad for my kids, and for me that everyone made the time. Not really sure who had the idea to do it, but I am glad that you did.
In other journal notes, I have talked about milestones. I have said it over and over again, this entire disease is about them. In 12 days it will be one year since the diagnoses. Connor is almost 1/3rd of the way through this. It’s truly hard to believe that so much time has passed. Some days have been longer than others, but still it’s a full year. In 2 years, 2 months and 12 days, his port will come out of his chest, and life can get into the routine of soccer and ice hockey, instead of doctors and hospitals. That’s a routine I want to get out of.
I asked Connor tonight how he was doing with his cancer and if he had any questions, he answered, “no.” Then he said, “But you do pray for me right dad?” And I told him “Yes son, everyday.”
On that note, I ask all of you the same question Connor asked of me; Do you pray for Connor? I hope that you can tell me, “Everyday.”
I have posted new pictures and I will be updating on Wednesday with the 2 week ANC counts. I want to wish all of you that read this webpage and all of your families and friends a very happy and healthy 2006.

Sunday, November 27, 2005 9:58 PM CST

On Monday of last week, Connor had his appointment. He did very well. His ANC counts were right in line, and he was able to get all of his chemo drugs. But if that was all there was, this journal would be very boring. Personally, I wish it was boring, but this wasn’t that type of month, and this isn’t that type of disease.
Sean & Connor began coughing about 2 weeks ago. On Monday, we decided to get him checked out at his pediatrician before going to the hospital for his chemo appointment. The doctor checked both Sean and Connor for their coughs. It was determined that Sean has an upper respiratory chest infection. Connor on the other hand has pneumonia and 2 ear infections. He was then sent to Children’s hospital and put on Receptin which is an antibiotic drip that lasts 30 minutes. I think that sometimes you have to be knocked down before you can look up and see the light. I have said before that you never get more than you can handle, but sometimes it does seem to push it right to its limits. This week, both boys stayed home from school, and they both seem to be getting much better.
That brings me to Thanksgiving. Definitely a time for reflection and a time for giving thanks for what we have. I would usually never do this, but with everything that the first month of this year has brought on, I thought it was important for me to tell the boys what I was thankful for, and then we all went around the table to do the same. Each boy said the same thing, they were thankful for their mom and dad, and their dog Reilly. They were thankful for their grandparents and all of their Aunts and Uncles. Nothing earth shattering, but nice to hear none the less.
It wasn’t until later on that Connor came to me and said, Daddy, I remembered one more thing that I am thankful for.” So I said, “OK, what is it?” He said, I am thankful to be alive, because I could have died from cancer.” I told him I was thankful that he was still here too, and that he wasn’t going anywhere. I consider myself to be a big tough guy, although some of you that read this may disagree since I open up more here than anywhere else in my life, but that boy can make me shed a tear or two. He tugs at my heart on a daily basis, and just when I think he can’t shock me, he says something as profound as that.
I have heard many people talk about living their life to the fullest everyday. But I question if they really know what that means. I thought I did, but in reality, I didn’t. It took a 3 year old boy to get that sick for me to understand that you have to be thankful for the gifts in your life, and not the ones you strive to get. I know I am very thankful for those that touch my life everyday. I consider all of you gifts. I am thankful for all of the prayers and I know it is the love for Connor that all of you have that made his remission a reality, and it will see him through to the end of this cancer fight.
Connor’s next appointment is on December 15th. That will be a sedation appointment where he will get his next bone marrow and spinal tap. I will update everyone again around that time.

Wednesday, November 1, 2005 9:50 PM CST

Connor’s appointment went extremely well. He has actually gained 3 pounds and grew ½ inch since his last visit a month ago. The doctor told us last month that he should experience a huge growth spurt since the very heavy doses of chemo were over with for now. All of his counts were in the appropriate ranges and he is progressing along without a hitch. The doctor did tell me that it is possible for him, almost probable that he will get sick and have to be hospitalized over the next few years, but he has defied them so far
The rest of the month has been kind of uneventful. Connor did move up in belts in karate, and he is still enjoying school. His activity level is still the same, with the same stamina from day to day. The only time he ever experiences and fatigue is after his treatments. That was the case today when I was taking him home and he fell asleep in the car. That stamina quickly came back as he got dressed to make the rounds on Halloween. He was “The Thing” from the Fantastic 4, and Sean was a Skeleton.
Another significant achievement was his first haircut. His hair began to grow back in August and I needed to take him for his first cut. It was as important as the first haircut that he got when he was 2 years old. It is another one of the milestones that I have talked about. Each one brings us one day closer to talking about the son that had cancer, as opposed to the son that does.
His next appointment is on Monday, November, 21st. I will be sure to update the site again on or before that. As I looked at the site today, I see that we are approaching 11,000 hits on this page. It’s truly amazing to me the amount of people that continue to check up on Connor. And I know that it isn’t just family that checks on him. But the way I feel about all of you that check this site, you are family. Thank you for taking the time out of your day to stop and think of Connor and the challenges he faces.

Monday, October 3, 2005 5:00 AM CDT

(NEW PICTURES ON PIC PAGE!!) I’ve got great news to report about Connor today. Last Thursday he went to the doctor to see if he could begin maintenance. He’s had 2 weeks of minor setbacks with his ANC count being below 1000. But this week his ANC was 4140.
The interesting thing about cancer is that it is the milestones that make this pass a little easier. Instead of focusing on March 7, 2008, (Connor’s last chemo appointment), these dates are smaller points to focus on.
To explain the significance of maintenance is not that difficult. I can think back to 9 months ago when Connor was diagnosed and the feeling of hopelessness that I had. Each milestone that he passes has made this experience a little easier to swallow. Spending nights with him in the hospital, then making the weekly trips, and then finally the every 10 days trips that have been made for the past 3 months. The maintenance phase has Connor going every 4 weeks. He will also not need as many spinal taps or bone marrow checks.
Beginning last Friday, Connor began getting a different daily dose of pills at home. These pills are all of the chemo drugs that he was getting weekly at the hospital in needle form. He has also added steroids again to his daily dose. The steroids will only last for a week, and then he goes off for a week, and then back on.
The other interesting thing that Connor’s doctor told me this past week was that Connor will have to continue going to the doctor until his 21st birthday. This was a little bit of a shock for me. I kept focusing on the 2008 date. I couldn’t wait for this cancer to finally be over. The reality of it is that he will always be a cancer survivor, so I am not sure why I was surprised by the news of him going for check ups, but I was. He said that he will have to go every month during the first year after he finishes treatment, then every 3 months during his second year after treatment ends. During the third year he moves to every 6 months. And finally he will go once a year until his 21st birthday.
So while I have talked before about the 2008 date, it appears that I will have to worry a lot longer than that. But as a parent, I guess I should have known that we even worry about our kids when they are healthy. The cancer just adds a twist that other parents don’t have to worry about. But I also know this, for those that don’t have cancer to worry about, there are other things. Some parents deal with autism, behavior problems, unexplained illnesses, going off to college, getting their license and taking the family car for the first time. There are a whole host of other items. What keeps it in perspective is remembering that we are never given a load we can’t carry. When I realized that, the whole issue of being the parent of a cancer patient became a little bit easier.

Sunday, September 25, 2005 10:00 PM CDT

On Thursday of last week, Connor had his appointment to begin his maintenance phase of his chemotherapy. Although we all went in with high hopes of starting, his ANC levels were only 720 and so he couldn’t begin. The minimum for the ANC to begin maintenance is 1000. They have scheduled his next appointment for Thursday, September 29th.
To say this was a let down is an understatement, however, the extra time is built into his chemotherapy schedule for times like this. He will still finish chemo on the same date he has always been scheduled to finish.
I will write more on Thursday after he begins the maintenance phase.

Wednesday, September 7, 2005 10:28 PM CDT

Last weeks appointment went really well. All of Connor’s numbers were in the good range and he was able to get all of the chemo drugs. He also had to have another spinal tap. It has been so many I have lost count. But once again, there is no cancer in his spinal fluids, and this is great news.
Connor is still very active. He is going to gymnastics every Tuesday, and then he and Sean both take Taiquando with me on Saturday mornings. He did seem to have some effects from the chemo this past Saturday, as he sat down for most of the session saying he was too tired.
This past Tuesday, Connor had another appointment. His ANC levels were a bit low at 990, so no methotrexate was given. This time there were no side effects at all. He kept all of his energy, and he was able to do gymnastics on Tuesday night with no ill effects.
I want to apologize for not writing for 2 weeks, even though I said I would write after last weeks appointment. I know this is your connection to Connor and his daily comings and goings, but sometimes the words just don’t come, so I don’t write. Not to mention there is always something going on.
And since there does always seem to be something going on, it hit me today when I was talking about putting things in perspective. Many years ago, I was a corporate trainer for the company I worked for. I would train salespeople on the art of selling. I would always tell them, “Salespeople don’t have the luxury of having a bad day, the customers really don’t want to know about it.” I would tell them, “If you want to feel better about your own life and the things going on in it, talk to your customers, they always have something that is worse than your problem and use that to get in the selling mode.” I have always believed that, but never thought about it with Connor’s cancer. I am not really sure why. I think that trait just comes naturally to me, so it is second nature and so, I don’t have to think about it.
But just using the last 7 days as an example, does Connor or me, or anyone reading this really have it that bad. In the past 7 days over 10,000 people could have lost their lives in hurricane Katrina. There are people that lost family and friends. There are people without roofs over their heads. There are children that will never be reunited with their parents. My own sister had a tree fall during the storm and it damaged all of the cars in her driveway. When it fell it tore up the water main and flooded the downstairs of her house. There are people that will be diagnosed with a terminal illness as you are reading this and find out they won’t live to see the fall leaves change.
Perspective. When I think of it, and how it shapes me as a person, and how that shape affects those around me, it makes me thankful. I am not sorry that Connor has cancer. He will live to tell his story to his own children. I am thankful to see his hair growing back. I am thankful that he has touched the lives of hundreds of people in such a positive way. I know that some of you have read this journal and gone and kissed your kids, or hugged them. I am thankful for that. Each of you has probably looked at your own mortality since Connor started his journey and been thankful. He is an amazing boy and I am thankful to be his dad.
On September 22 Connor will go into the hospital to have his levels checked. If his numbers are all good, he will begin the maintenance phase. It seems that as hard as I try I can’t remember a time when he didn’t have cancer. He has adjusted to it. It is as much a part of him as his beautiful blue eyes. But he still laughs, he still tells jokes, and he still loves his family. And when put you put that into perspective, do you really need anything else?

Tuesday, August 16, 2005 7:51 AM CDT

(NEW PIC ON PIC PAGE)
I went to NJ this past weekend for a family party for my nephew. He graduated high school this past June and now he is off to Old Dominion University in Virginia. This is a right of passage for teenagers and I was glad that I could be a part of it. I don’t want to sound like an old man, but I truly can remember when he was just born. It was also the first time in a long time that all of my brothers and sisters were able to gather in one location at the same time and just sit and spend time with each other. It doesn’t happen enough, so I think we all look forward to the times that we can pull it off.
On this trip, I was able to bring Sean. He was very excited to go to NJ and see all of his big cousins. He loves to spend time with them. It is one time where dad just slides down a rung on the ladder. But it is OK, I have a very diverse set of nieces and nephews. All with something to teach my children so I am glad to watch him spend that time with them.
I didn’t tell Sean he was traveling with me until Tuesday night. He was very excited, but he wanted to know why his brother and mother couldn’t come. He was really concerned about leaving Connor and that Connor would cry if we left him at home. I assured him that it would be OK. But I told Sean not to tell his brother. I wanted to tell Connor myself, and I didn’t want Sean to try and let him know that we’d be traveling without him. Sean said, “I know, let’s just tell him we are going to the store, and then we’ll come back on Sunday!” I told him I didn’t think lying to his brother was the best route to take, and I would tell him the truth on Wednesday.
Sean was very good about holding his secret. When I did tell Connor that we were going to NJ, he had the reaction that my 6 year old had predicted and began to cry. At first it was just sniffles, but then it turned into an all out whale. He wanted to know why I wasn’t taking him and he said he wanted to go. I explained that I was doing this for Sean’s birthday, and that I would take him somewhere on his birthday. He could choose anywhere he wanted to go, and just he and I would take the trip. But he was relentless. He continued to voice his displeasure through the night, and even into the next morning. I hadn’t given much thought to the fact that Sean and Connor had never been separated before. Except for the couple of nights Connor spent in the hospital this year, these two have been best friends. It was very hard for them both to separate from one another.
By Sunday, Sean looked at me and said, “Dad, can we go home now please?” He had seen enough of the cousins and all of the aunts and uncles, and he just wanted to get home. It is true there were no cousins to swim with on Sunday, or play with. But his weekend getaway had come to an end.
Due to some bad weather, we were delayed and didn’t arrive home until almost midnight. Since we were out so late, I kept him out of school on Monday and let him sleep in. I was also taking Connor to the doctor yesterday so I had him home with me as well. Connor was up at 7:00 and asking for his big brother, but I told him that I was going to let him sleep. By 11:00am, Sean was still asleep, so I finally went into his room to get him. Once awake, he asked for his brother. The two of them hugged as if they were separated for decades! They spent the next hours holding hands on and off. It was the nicest thing I have seen in a while. I hope they continue as adults to remain this close.
Sean accompanied Connor and I over to the hospital for his treatment. This was a critical week for us since Connor had never been able to get the methotrexate after getting 100mg the week before. But to my surprise, all of his counts were in the right ranges. His ANC was over 2600, and the red, white and platelet counts were all in good shape too.
He received all of the correct doses, and was in and out of the hospital in just over 2 hours. His next appointment is on August 25th at 8:00am. It will be a sedation appointment where Connor will get another bone marrow and spinal tap to see if the cancer is still in remission. We should be there for about 4 – 5 hours.
I don’t want to jinx myself, or Connor, but I talked to Connor’s doctor yesterday and I asked if Connor’s experience is the normal experience for a cancer patient. We have been told, time and again, Connor will be hospitalized during this phase of treatment. We have been told that he would run high fevers. We have been told that he would have no energy and may appear lethargic at times. None of these things have happened and I was assuming that they were saying those things just to prepare us for the worse, but to expect the best.
I was told that of all of the kids at Children’s Hospital of Atlanta (CHOA) that have been diagnosed this year, Connor is, by far, doing head and shoulders above the rest. The doctor said about 1 in 100 will go through this with little to no complications. And Connor may just be that 1 in that 100. I sure hope so.
I have to give the credit where it is due. I think CHOA is doing a great job at treating him, and I think that all of the prayers are definitely being answered. So keep them up. I’ll write more next week after the sedation appointment.

Monday, August 8, 2005 9:01 AM CDT

Last Thursday, Connor had an appointment to get his chemo. Everything went really well. His counts were all good, his ANC was way up, and he was able to get both the vinchristine and the methotrexate drugs. During this phase of delayed intensification, Connor has gotten escalating doses of methotrexate. They start out at 50mg and then add 50mg every time. He is currently at 100mg and this was the maximum dose he has been able to take each time. Once he gets to 150mg, it seems to lower his ANC. But this phase is just about over now. Then he goes through 50 days of another phase, more steroids, more vinchristine, and other drugs, and then, maintenance.
The maintenance phase will last for the remainder of his chemotherapy. He will go once a month to the doctors at the hospital, but for the most part, he will get all of his medications at home. There will still be the occasional bone marrows and spinal taps done to make sure the cancer isn’t coming back. As long as he continues to make the progress he has made over the past 7 months, there won’t be too many other large hurdles to face.
Today was the first day of school and it is a day that both Sean and Connor have been looking forward to for a few weeks. Each of them was up and out of bed, dressed and ready with backpacks on by 7:00am. Connor kept his on until we left at 7:30! He talked about his first day all the way there. He opened the door and couldn’t wait to get into his class. He took his backpack and placed it on the hook with his name, looked around at all of the other kids and then grabbed onto my leg so tight that took away my circulation! It took me 15 minutes to get him to let go so that I could leave.
When I did leave, I took a look back into the classroom. From where I stood, he couldn’t see me so I just watched him. He was warming up to the teacher and to the other kids around him. He was smiling and laughing while they were singing “The wheels on the bus”. It is a proud moment for a parent when their child starts a new chapter of their life. I had my doubts 7 months ago on just how long his book would be. I thought it may turn out to be a short story. But as I look at him in that class, I realize it is more about the quality of the book than the quantity. I think the quality of each of his chapters so far has been the very best I have ever seen, and I just can’t wait to turn the next page and see all of the new chapters that are yet to come.

Wednesday, August 3, 2005 6:20 AM CDT

Why is it that when our kids get older we say, “I can’t believe how BIG he’s getting!” But when we have birthday’s as an adult we say, “I can’t believe how old OLD I’m getting!” I don’t know when it changes from having fun with a birthday party to counting the latest age spots that appear. But it does happen to us all…if we’re lucky.
I only bring this up because today is Sean’s 6th birthday. I am amazed that 6 years have gone by. But I was just sitting and thinking what that actually means. If Sean is 6, than Connor must be 4. And if Connor is 4, that means that 7 months have passed since his diagnosis. And if 7 months have past since the diagnosis, that means that there are only 31 months left to battle cancer. Actually if you want to know the truth, there are 948 days left until the chemo is over, but who’s counting? I am!! And I can’t wait to turn 43 years and 81 days old. I am sure that it will be a great birthday present.
Just 18 days after Connor is done with his chemotherapy, he will turn 7 years old. He will have a lot to celebrate that year. His gift that year will be life. A life of knowing that he beat cancer. A life of knowing that no matter what curve ball is thrown his way, if he just chokes up, he can hit it. He can beat it.
Can you imagine if you knew in your heart that nothing that life could ever throw at you could be worse than something you have already gone through? Wouldn’t that make facing the daily grind a little easier? I believe it would for me. But sometimes I think we find ourselves trying to guess what will happen next, and while we are thinking about that, we are missing our entire lives. The years slip by when we’re not paying attention. I guess going through cancer as a parent, some people might think I would hope it flies by. And to be honest, there are times I have thought that. But if they fly by I will miss my sons growing up. You can’t get back what has already past you by. I hope I can remember that when I am thinking that I am stressed out by something that happens at work or when my kids aren’t being the perfect little angels I am trying to raise. Each day is a chance to watch my sons grow and I don’t want to miss a part of that.
On Monday of next week, Georgia schools go back into session. Connor will begin his first day of Georgia Pre-K, and Sean will be headed to the 1st grade. It’s hard to believe how big they are both getting! Oops, there’s another age spot!

Tuesday, July 26, 2005 10:35 AM CDT

Today is Connor’s appointment for his bone marrow and spinal tap. While I told all of you I was going to update last Friday, the level of frustration that I felt was what kept me from doing it. For the 3rd week in a row, Connor’s ANC level was below 1000. For the 3rd week in a row, it was only in the 400’s. That being said, I was frustrated and was not in the writing mood. And trust me, what I would have written, you would not have wanted to hear.
It’s the not knowing that is the hardest. It is the anticipation of the event, only to be let down at the last minute. Each week we go in there and just hope and pray that the levels are where they need to be so that we can move forward. When the levels aren’t where they need to be, it is like taking a step back. The last thing any of us wants to do is take steps back. I can’t wait to wake up and have this be a memory. A very distant memory.
About 6 months ago when I was still explaining all of this cancer business to Connor, I made him a promise. All of us make promises, and not all of those promises are kept. Even the most mundane of promises like, “I promise to take out the trash”. Or “I promise not to be late”. All of these are the little things that some, if not most of us let slip by. Not intentionally, but we just get caught up with our daily routines and the promises are moved to the back of the pack. Not with malice, but with poor memory, or judgment. I am as bad as anyone with the poor memory and judgment.
But this was a promise made to my son. Not that those are never broken, but as a dad, they can be the most important to keep. I tell both of my kids that, “A man is only as good as his word.” I think that I say that to them at least once a day in the daily part of life. Their integrity means a lot to me. It is important as a dad that I pass on the traits my own father passed onto me.
While shaving the other day, I grabbed Sean and started play shaving his face, and neck. Connor came in and said, “Dad, I want you to shave my head.” This came as a shock to me because Connor has grown very fond of the 100 hairs left on his head. But I took my razor and shaved off what was left of his hair. When I was done, Connor said, “You know what that means dad, you have to shave your head now. Remember, a man’s only as good as his word.” And he was right. So I got a pair of clippers and in 15 minutes, I was as bald as him.
I will be honest with all of you, I had hoped he would have done this a lot earlier in the summer. For no other reason than I didn’t want the tan lines on my head. But tan lines and all, my head is now out there for everyone. I told Connor after I did it that it is no big deal to shave my head, because just like his hair, my hair will come back. (Or at least most of it will…..I hope!)
Today is a big day again. I am very hopeful that Connor’s counts will be in range and that the spinal tap and bone marrow can happen. If that is the case, I will be on here to update. If not there will be a short note saying that he was low. Check out the pictures section to see the new “twins” in the family.
UPDATE: Connor's counts were all good. He was able to get all of his procedures and move forward. Another good part about the day was that they told us that Connor's last day of treatment, barring any huge setbacks, was March 7, 2008. That just happens to be a Friday. Great way to start the weekend!
Connor has another appointment in a week. I will update the site then. Thanks for all of the thoughts and prayers, I know they helped.

Tuesday, July 12, 2005 9:20 AM CDT

These past two weeks have both been count weeks. The only thing that had to be done was Connor had to have his blood tested to see if all of the counts were normal. Two weeks ago his ANC count was only 130. The normal level is anything over 1000, so that gave us some concern. The only thing that we had to look out for was his temperature. As long as his temperature stayed below 101, than everything is OK.
On Wednesday of last week, Connor’s temperature shot up to 100.5. That was a scary day, but I sat him down and told him to relax, gave him some fluids and within an hour, his temperature was 99.5. After that there were no issues last week.
This week, Connor went to the doctor on Monday. His ANC count is now 460. So once again, fever is something that will have to be monitored all week. This Friday, Connor goes in for another spinal tap and bone marrow check. He is count dependant, so if his ANC doesn’t come up, he won’t have any procedures done at all.
It’s hard to believe, but Connor is already into his 7th month of leukemia, and that means there are only 31 months left. The last 7 months have really gone by in a blur and I am sure the next 31 will do the same. Connor is really doing well and I am sure it is the outpouring of support and love from friends, family and strangers that has helped him in his recovery. As of today, there are over 9000 hits to his webpage, and that is a testimony of the love that all of you have for Connor. Thank you, it helps him.
I will update again on Friday and let all of you know if his counts were good enough to get the procedures done, and if so, what the outcome was.

Wednesday, June 29, 2005 10:09 AM CDT

Tuesday was just a counts day for Connor. The entire appointment lasted just over one hour. I wish they were all that quick. Last week was the first week that Connor was receiving shots at home. He had to get 1 shot on Tuesday, Wednesday, and Thursday nights before he went to bed. Each night he really did well. They was very little crying, but there was some complaining. We did put some Emla cream on the shot site before administering the shots. Emla is a lidocaine cream, so it will dull the shot, but not the injection afterwards.
Each night Connor would get a sticker for doing a good job, and then when he got 3 stickers his nurse told him that she would let him go to the prize box at the hospital. So he was very happy to give his sticker card to his nurse and pick out a prize. He went with a Matchbox car.
Once again, Connor still must be monitored for a fever. There is an outside chance that he may need blood on Tuesday of next week when he goes back for his appointment, but it is a slim chance. And as long as he keeps his fevers below 101, he can stay out of the hospital. His energy level is still great, he plays everyday with Sean and plays right up to bedtime.
His appetite is now back to normal, and his weight is at 40 pounds. He was 39 pounds on January 7th 2005. That is the day this all started. Except for some hair loss, he looks the same.
As I said, his next appointment is on Tuesday of next week. I will write more after we get home. Connor tells me to say Happy 4th of July to all of you that are checking up on him. I hope it is safe for all of you.

Monday, June 20, 2005 5:15 PM CDT

Today was a very long day. Connor’s appointment was at 9:00am so we left the house at 7:30am. He was count dependant again, so the very first thing is to make sure that he meets all of the requirements before moving forward.
They accessed his port and there were no issues. The counts came back and everything was fine. He was in the correct range to move everything forward.
The schedule for the day was; flushed with fluids for an hour, then spinal tap, then methotrexate chemo, then he had to be moved to a recovery room and then he got more chemo. Once that chemo was given, he had to be flushed out for 3 hours and monitored. Finally at 4:00pm, he was ready to go home.
One thing that I did leave out is that Connor will now start to get shots at the house. These are 1” needles that have to be given in his thigh and they contain Cytarabine. Not really sure what that is but it is part of the protocol. They tell us that giving the shots at home is easy and not to worry about it. I guess I will tell you it is easy after the first one. These shots will be given 4 times a week, for 2 weeks. He is also starting to take a pill called Thioguanine. This is another chemo drug and he will take this pill once a day for 14 days.
The one thing about this last drug is that Connor falls into the 5% of patients that can’t fully absorb the drug into his system. So the doctor said that if Connor is to go into the hospital it will be the week of July 4th. That will give the drug enough time to get into his system, and long enough to mess with his ability to fight off infections. So fever and headaches are things that are now critical again.
Other than that, Connor is still a big ball of energy. His weight is up at 44 pounds, and he continues to be in great spirits. His next appointment is next Monday and I will be sure to update as soon as he is through. Next week is simply a count week. No real chemo will be given and they are just going to look at his counts to see how these drugs are affecting his body.

Tuesday, June 14, 2005 9:14 PM CDT

Connor was count dependant on Monday. That means that his ANC had to be over 1000 and his platelets had to be over 100,000. Unfortunately, his counts were only half there. His platelets were at 218,000, but his ANC was only at 340. The interesting thing about the platelets is that they were the first indicator that Connor had cancer. So when I heard this latest number, I was happy. Not that the ANC was so low and that we couldn’t continue the chemo, but that the platelets were so high.
The first week they gave us a book to record all of these numbers. This way, with all of the commotion at the hospital, we don’t have to try and remember everything. Well the first recorded platelet numbers in the book read 2000. That 2000 was a sure indicator on that January 7th morning that Connor had cancer. So it was very nice to see a high platelet count.
Some in my family have already asked me, “Is that normal to have the ANC fluctuate so much?” The simple answer is yes. They told us 2 weeks ago, NOT to plan on him going forward this past Monday. They said his ANC would most likely be low. So I guess those 10 years of school that the doctor went to did pay off, my mom was right! I should’ve been a doctor.
Anyway, Connor continues to be a ball of energy. He is not as active during the night, and he finally slept through the night for the first time on Monday night since going off the steroids. His appetite is more suppressed, but he is still eating a lot. And the hair…still trying to hang on. But the attempts to remain seem futile. I can’t see there even being a piece left in about 2 weeks. But he still says he doesn’t want to shave, so we wait.
It was pointed out by a small child at the mall today that Connor is bald. She said to her dad as Michelle and the boys walked by, “Hey dad look, that little kid is bald!” But they just kept walking by. My take on this incident is simple for Connor, and if he asks, it is how I will tell him to address those things. I am going to tell him to just look at them and say, “Of course I am bald, I have cancer!” I don’t want him to be ashamed of it. Because if he is ashamed of it, then he is ashamed of a part of who he is. It doesn’t define him, it’s just a small part of him. Another week has begun, and with just 2 years and 9 months left, it seems as though Connor is making it just fine. Once his hair, and mine, are completely gone, I will add more pictures to the webpage. Should be an interesting 4th of July!! His next visit to try and get the next dose is on next Monday. I will update then, unless there is something else to report.

Saturday, June 4, 2005 9:05 PM CDT

Connor has had a good week. Last Monday he went for his chemo and his counts were low, but that was ok since he wasn't count dependant. He was able to get all of the needed chemo and blood work done.
This Monday is a count day. He will go in and find out where the counts are. Nothing else. If everything is good, then he can move into the next stage of the delayed intensification. If they are not, he may need a blood or plasma transfusion again. But we will just have to see.
The steriods are really kicking in again. He has gained about 5 pounds in total so far, and he is eating us out of house and home. I won't get into the entire list of what he ate, but lets just say he eats until full and runs to the bathroom to make more room, and then eats some more. He is up at least 3-4 times every night with food cravings and won't go back to bed until he has gotten what he wants.
This occurs about every 3 hours, every night. I can't wait for Monday to come so he can stop these steroids and he can get back to being normal.
Most of these journals have been about Connor. A few have been about Sean and even fewer have been about the trials of parents through all of this. Some of you have called Connor tough or wise beyond his years. And I have said that he is truly a hero of mine. But today I am writing about another hero that I have, my niece Jessica.
I know that Jessica didn't do what I am about to tell you about because she thought I would write about her. As a matter of fact, no one in the family knew what she was up to until after it was done, except for her mom, & stepdad.
In a very selfless act, Jessica decided to raise awareness, while raising money for the St. Jude's Bike-a thon for cancer. She rode in this bike-a-thon for Connor and raised the most money in her school in Illinois.
Recently Jess celebrated a birthday and she recieved $60.00 as part of her gifts. She took most of that money and gave it to the St. Judes hospital. She requested donations from family, friends, neighbors and I am guessing a few strangers, all in the name of her cousin.
To make the ride even more special for her, she bought a yellow shirt and was able to get 2 of the pictures off the website and make them into prints for the shirt. So she rode with a picture of Connor on the front, and with a picture of Sean and Connor on the back. The words on the front read, "Cure for Connor" and the words on the back read, "Riding for you , Connor!".
And if all of that wasn't enough, she then got all of the kids from her school and the teachers that rode bikes that day to sign the shirt. The love and kindness of complete strangers is overwhelming at times, and opening the package with that shirt, was such a time.
Jessica, it is our selfless acts that distinguish the good people from the bad. You my sweet little niece, are one of the good ones. Thank you , and all of those that have read about Connor, and signed that shirt. He will wear it as proudly as you did the day you rode your bike. I have put your picture on Connor's page of pictures. Thank you from the bottom of my heart. I love you.

Thursday, May 26, 2005 10:35 AM CDT

Connor’s treatment went well this week. He is very irritable from the steroid doses that he had to take last week, but he stopped taking them on Monday. He has ballooned up a bit in his face again. He had been maintaining his weight at about 40 pounds, but over the past 7 days, he has gained 4 pounds back. His energy level is through the roof. He is running around like crazy. This is another side effect of the steroids, but he will start to calm down soon. However, he goes back to the doctor on Monday, and he will begin more steroids for another week. So this will all come around again.
So far, the chemo dosing seems to be fine. They said that each child reacts differently, so we can hope and pray, he continues to react favorably to all of this. There are about 6 weeks left of delayed intensification, so far, so good. I want to take more pictures this weekend and see about getting them up on the webpage. He hasn’t changed that much, but maybe a little more puffy in the face right now. But I will, as I have in the past, try to let all of you see this experience in this journal, and in his pictures.
We are over 8000 strong on visits to this webpage. As my sister Pat put it, she is amazed at all of the love. At times, I am overwhelmed by it too, but if you have even met Connor, you realize that this is a boy that is so easy to love. He is too young to let all of you know how he feels about your notes, but I know that one day he will make a difference in the lives of others because of the difference all of you are making in his life today.

Thursday, May 19, 2005 9:51 PM CDT

It was really a tough day today for everyone. When Connor and I arrived at the hospital for his 1:00pm appointment, we were running about 5 minutes late. The Atlanta traffic seemed to pick up as we left the house. But we took our seats in the waiting area, and did just that…..waited. At 2:05pm I got up to ask why we hadn’t been called yet. At the same time, a nurse came out and called Connor’s name. So we went into the back. They took all of his vital signs, his weight, height, blood pressure, and his temperature. Then they put us in another room where we waited….and then waited some more. At 2:45pm they said, you are in the wrong area, you need to be on the other side.
Most of the time, I am a patient man. Actually that is a lie, I am really not patient at all. I wrote that so that those of you that know me might crack a smile! And for the rest of you, now that you know I am not patient, most of you can imagine, I was not a happy camper at this point. And Connor wasn’t in that good of a mood either. But finally we were taken into a room where today’s procedure would take place.
Connor was ready, the nurses were ready, and I thought I was ready. It takes 4 people to carry out today’s procedure. One nurse holds his legs, I am holding his arms and upper torso, and two nurses, with 1 ½” needles take aim at his thighs. With a quick count of 1,2,3 it is over. Two needles going simultaneously into his thighs. The last time this happened, Connor was fine. He didn’t even cry. This time was dramatically different. He screamed, and shook his little body but we held him down and in place as his medicine was delivered. As my dad would say, “the cure can be worse than the disease”.
I don’t get to overly emotional about Connor’s cancer, but today was a difficult day. There was something about the needles into his thighs, and his cries as if to ask me, “Why are you doing this to me?” Whatever it was it was a very powerful moment for me.
After the shots were given he had to be monitored for 90 minutes to make sure there was no reaction to the medicine. Luckily there were no reactions, so we finally left the hospital at 4:30pm. His next appointment is next week. And it will just be a continuation of the new chemotherapy drugs for this phase. He isn’t count dependant, so he should get all of the medicine without any problems. I will write more next week. Have a great weekend!

Wednesday, May 18, 2005 12:45 AM CDT

Finally, some positive news to report from this end. Connor’s appointment went very well on Monday. He had a spinal tap and was given his next dose of chemotherapy. The appointment took a little longer than normal, it was about 5 ½ hours long, but the outcome is what we were looking for.
This next phase is sure to zap a little of his energy. Even when I brought him home, he wanted to take a nap. When he woke up, he had a fever of 100.5. I monitored it over the next hour and it was still high, so I gave him a bath. The bath lowered him back to normal, and the fever hasn’t returned. So I am sure it was from the new drugs that he was given. Fevers are a sign that something is wrong, as all of you know. But in a leukemia patient, it is critical to monitor any fever. If he keeps anything over 100 for 3 hours, he will get hospitalized. If his fever hits 101, he is automatically admitted into the hospital for at least an overnight stay. Luckily, it went down and then he got a little energy back. Time will tell how he reacts to this phase. According to his doctors, some do better than others, so I guess we will hope that Connor continues to do as he has with every other phase, very well!
Connor is now back on steroids again, but only for 7 days. It took approximately 2-3 weeks for the steroids to have the joint pain and swelling effects that they had last time, so hopefully he will eat a little more, and that will be the end of it. He will also need to get shots at home. These will be given by me, and the nurses have graciously told me that I can practice on them with real needles and saline into their arms. On Thursday, Connor has to go back to the hospital for the 2 big needles into his thighs again. If you have been reading this journal for a while, you may recall that in the first weeks, Connor had this done and came through like a champ. I wanted to lose it, but he did great!
So that is about it for now, I will write more about his Thursday appointment on either Thursday when I get home or on Friday. Thanks again for checking in and thanks for all of you that donated to the leukemia society for the upcoming rides. As of today we are at over 7000 dollars. A far cry from our 20,000 dollar goal, but it is 7000 that will help families of children and adults affected with blood cancers. So again, from the bottom of my heart, thanks. There is still time to donate, and the website can be launched by clicking on the link below.

Wednesday, May 11, 2005 11:57 AM CDT

The high level of frustration that I feel is the only reason for not writing earlier in the week. Once again, Connor was unable to get his treatment due to low ANC counts. He did come up from 600 to 840, but still too low to begin the next phase.
It is the anticipation of it all that is really driving me crazy, although Connor just says, “I guess we’ll just have to come back.” But there is a whole mental process that you go through to prepare for these visits, and it definitely affects the adults a lot worse than the kids.
So like Connor says, we’ll just go back next Monday and hopefully his counts are back over 1000. If not there is a bone marrow procedure that has to be done, and this is one extra procedure I would just rather Connor not have to endure.
Other than that, his spirits are very high, his energy is high, and he is running around with smiles all of the time. That certainly helps.
I will write more on Monday and hopefully it will be good news that we have started the delayed intensification phase.

Thursday, May 5, 2005 9:36 PM CDT

Most of you are probably wondering how Connor did on his appointment on Monday. Well, I will apologize for not getting it up here sooner. When Connor went to the hospital last Monday, his ANC levels were only at 600. They need to be at 1000 as a minimum to start the next phase of treatment. So this Monday, Connor will go back to the hospital and if his ANC is over 1000, we can start. If not, we wait another week.
Connor had a great week and is still in very high spirits. He is aware that he ANC is low and he just says that we’ll check it next time. Nothing seems to bother him. I will be sure to update again after we know more next week.

Thursday, April 28, 2005 6:28 PM CDT

It has been another really good week for Connor. Sometimes it is hard for me to remember that he even has cancer. We are really trying our best to make sure that we treat him as normal as possible. Since I am not having the thought of Connor succumbing to this, I have to treat him like this will be over in 3 more years. And when it is over, I have to make sure that I am not starting from scratch.
This week Connor went ice skating again. He is still a little uneasy on the skates, but he gets better every time he is there. He still likes me to hold his hand as we go around the ice, but if I let go he can do it on his own. I am sure that he will really get better once he goes every week like his brother.
Monday begins the next phase in his treatments. I am not anticipating anything dramatic on the very first day, but they have assured us that there will be some side effects taking hold by week 3. So as it is with every phase, it is a waiting game to see how he reacts to the drugs. So far, we have been very pleased with his reaction to the chemo. He isn’t getting sick from it, although we have some pills if he does get an upset stomach. There have been no fevers. There has been some hair loss, but not totally gone. And his energy levels continue to remain amazingly high. So while I am not looking forward to the next phase, I am hoping and praying that he will handle it the way he has handled the rest of this ordeal. Very well!
This is the final week for donations to the Leukemia Society and for the man that will ride in Connor’s name, Harold Bamberg. We were just informed by the insurance representative that the insurance will change on July 1st of this year. They will only cover 90% of the bills. That means we will be relying even more on the Leukemia Society for help. Currently the bills for Connor’s cancer are a little over $130,000. Come July 1st, we would owe $13,000 towards that total. Each week Connor spends in Children’s Hospital of Atlanta adds approximately $50,000 towards that bill. The Leukemia Society will go a long way in helping us manage all of these bills no matter how high they get, and no matter how much we owe. It looks like the $20,000 goal won’t be met. But we are only $3500 away from the $10,000 dollar mark. I hope all of you can see it in your heart to add to that total and help to reach the goals we have set.
To make your tax deductible donation directly through Harold’s site and to find out more, please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Sunday, April 24, 2005 7:49 PM CDT

It has been a great few days for both small boys, and this big one. Sean wasn’t really sure about where he was playing, but he was sure about going downtown. Connor was excited to see everything surrounding today. The really cool thing was dressing in the Atlanta Thrashers locker room. All of the kids even got to get dressed in the same places that the pros get dressed in. Sean had his own locker! The nice thing about today was that even Connor realized it was about Sean. He allowed him his moment of glory and was content just to watch.
The best part of the day for Connor was when the Atlanta Thrasher’s mascot came onto the ice, and then came into the locker room and Connor got to see him up close. I think the best part of the day for Sean was when Miss Hewitt & Miss Grodzieki showed up to watch him play. He was skating and kept looking up to make sure they were watching him. Even the boys Aunt Sue flew down for the occasion and watched him play. She is returning home to NJ at 6:00am.
The best part for me was watching Sean score a goal in Phillips Arena!!! He was following up a play on the far end of the ice, the kid with the puck lost it and it fell onto Sean’s stick. He just grabbed it and shot it into the goal. He was very proud of himself, and he was even using his brother’s hockey stick on the ice today. I thought that was really cool of him to do. And yes, we took pictures. There are 2 new pictures that I am going to have up by Monday. So if you’re reading this, please check out the new pictures too.
We have another week of limited drugs. Nothing is scheduled for Connor until May 2nd. That is the beginning of the delayed intensification phase. It is going to a fun week of trying to do as much with Connor as we can since he is likely to feel a little under the weather for the following 6 weeks. I will write about anything we do on Thursday of this week.
I really do want to thank all of you again for checking in on Connor during all of this. I know that the notes aren’t coming as frequently as they used to but as this cancer moves into weeks and months and eventually years, it becomes more commonplace. It is still just as serious as it was on day one, but it is now something that I look past and try to focus on the positives in his life. He is a very strong, very courageous boy with such a bright future. Cancer is something Connor has, but it will only be a small bump in his very long road. It is something that we can define, but something that will never define him.

Thursday, April 21, 2005 10:03 PM CDT

Connor has had an awesome week. He is really bursting with energy. On Wednesday, he even had enough energy to go ice skating again. He doesn’t go that often, but on occasion, he likes to get out there and give it a shot. Connor’s doctors told us from the very beginning that he would experience a tingling, or numbing, sensation on all of his fingers and toes. They said it would be a weird feeling and that he wouldn’t be able to explain it other that to say he was having strange feeling in his fingers and toes. When Connor’s doctor found out about the ice skating, he was very happy. He said that the skating would help to keep his equilibrium. The drugs that he takes have made his balance off just a bit, and his hand eye coordination is also off. But as it turns out, the skating will actually help him to maintain or at least sharpen these skills.
And speaking of skating, this weekend is a HUGE weekend for Sean. On Sunday, at 3:00pm he will skate where the likes of Wayne Gretzky and Mario Lemieux have skated before they ended their careers. I know that none of the 4, 5, or 6 year olds on the ice even knows who these guys are, but anyone that knows hockey does. And in case you can’t tell, I am more excited than the boys. But the nice thing is, Connor has said he wants to watch his brother, “skate in the city.” The boys have been to a few hockey games so each is aware of the arena. But I think it will hit him as he steps onto the ice, how special this day will be. They kids will also be getting dressed in the Atlanta Thrashers locker room where the real NHL players dress.
All through this process, Sean’s coach, Darren Eliot, has been aware of Connor and his leukemia. This past week I told him about the ride that Harold is taking in Connor’s name. He said he will put me in touch with the senior management for the Thrashers to see if they will be willing to help the cause. Darren is a former NHL player and Canadian Olympic player and has been an outstanding coach for the boys. I am hopeful that his connections will lead to big things for the Leukemia Society. As of this letter, we are at $5955. A long way to our goal. I know that some of you have said, “I am going to do it this week” and then get caught up in your day to day lives. And I know that I am a pain to keep asking for help on this, but this is my day to day life, and for Connor it is his everyday too, for the rest of his life. So if you have been putting it off, please make that donation today.
To make your tax deductible donation directly through Harold’s site and to find out more, please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Monday, April 18, 2005 5:46 PM CDT

Connor had a great day today. All of his levels were in the good range, and he was able to get all of the required drugs. We were able to meet with the head doctor today and he said that Connor looks great and that all of his previous tests are coming out just fine. His last bone marrow and spinal tap, all looked very good.
Connor’s next scheduled appointment is on May 2nd. That is when the Next phase, Delayed Intensification, starts. The doctor told us that Connor will most likely lose every bit of his hair in the first 3 weeks and that we must continue to monitor him for fevers and sores and other things that can come with this portion of the chemo. We have a 16 day absence from doctors poking, prodding and sticking things into him, so I know Connor is excited about that.
Connor is also very excited about watching his brother Sean play hockey at Phillips Arena this Sunday. Sean still thinks this is no big deal, but I am sure once he realizes the size of the arena, he will think it is cool. And if he doesn’t now, I am sure he will think so when he is old enough to understand.
The first 100 mile ride is rapidly approaching. There are just 2 weeks left to take the donations. We will be collecting donations until May 1st for the Leukemia Society so please make sure to place your donation today. As of 7:00pm Monday night, we are at $5920. That is an awesome display of generosity and I am sure we will hit our goal of $20,000. Please visit the website and donate today.
To make your tax deductible donation directly through Harold’s site and to find out more, please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Monday, April 18, 2005 9:49 AM CDT

Most of you know that on occasion, I travel. I never write it on here, and I have my reasons for that. I travel for work and while it does give me a short respite from the day to day reminder of cancer, it is never far from my mind. Last week while sitting at dinner with my 2 children I was telling them that I was going on a trip. Both boys asked where I was going, and as always I shared with them my destination. After telling them, Connor looked at me and said, “Daddy, I love you. And I don’t like it when you are away.” This was, to say the least, a huge pull on my heart strings. It was so much of a pull on Michelle’s strings that she began to cry.
No one likes to be away from our families. The only part of traveling that I really enjoy, is the coming home part. I write this note at 3:30am from 30,000 feet over the Pacific Ocean and I just can’t wait for that first hug or the excitement in their faces when I walk in the door. I know that days like that are numbered. My sons' will not see me as the greatest dad forever. If I am lucky, it will take them about another 10 years to be into their teenage years and to suddenly have the epiphany that they know everything. At that point, I will become the guy that makes the rules and is too tough on them when they break them.
Just before my father passed away, I wrote him a letter. I told him that I thought too many parents today try to be friends with their kids, and that I had never felt that from him. I never felt any type of friendship from my dad. But as I looked back over my life, I remembered the lessons he taught me as I became a man, and I realized that the toughness and love he showed, was a true friendship. He never took the easy way out. He was determined to let me make the failures on my own, and then be there when I fell. I try everyday to do the same with my boys.
I have been gone for a total of 6 days this week. I flew halfway around the world for a meeting, but I never missed my 7:00pm phone call to tell my boys that I loved them. I make that call from any place, on any continent in the world. I both love and hate that call. I love it because I get to hear my sons' voices and find out all about their day and what they did. But I hate it because it is a reminder that I have missed that day, and I will never get it back.
While I have been away this week, I will list a few things that Connor has done. First of all, Connor is back with Ms. Sharon. Sharon has looked after Connor and Sean for as long as I can remember. When I asked him about it this week, he was very excited to get back on a schedule and to see his friends. We also got Connor’s pictures back from Target. I wrote a few weeks ago that he had gotten them taken, and when Michelle went to pick them up, the people at Target asked if they could use his picture in their album to show other customers. He also got to see Kady, his baby sitter on Saturday. Since I was traveling this week, it seemed to be a good excuse for Michelle to get the boys their favorite sitter and to get some time out. When I called, they sounded like they were having a blast.
Connor goes back to the hospital on Monday for his next appointment. This is the last appointment in this phase. He then moves on to delayed intensification. That begins on May 1st. His appointment is early enough that I should be able to post a short update on his counts by sometime tonight.
I keep having to remind myself that God never gives us more than we can handle. And while each of us goes through our lives from the inside out, I know that that simple fact is sometimes ignored. Sometimes it is the people in our lives that seem to pile it on, but God only gives us the right amount. We seem to have the world on our shoulders and no one there to help with the load. The notes and the more than 7000 hits on this web page are proof to me that no matter how alone we feel, we are never alone, even when we appear to be.

Saturday, April 9, 2005 3:04 PM CDT

UPDATE AT BOTTOM
I am not very good at all of these dates. I know that I said Connor was going to the doctor on Thursday, and I had a few family members call about that today to see how he did. But, I was wrong. Connor goes in for his 8th bone marrow and 9th spinal tap in the morning.
His appointment is at 8:30am and we will be leaving for the hospital about 7:00am to beat the traffic. We are anticipating a normal day of about 4 to 5 hours. As long as all of the counts are correct, Connor will get all of his medications along with the chemo.
This last week was an exceptional one for Connor. His appetite is way up, although I am not sure why. His spirits are also way up, he seems to have a lot more energy. I know that some of the chemo drugs can do that, so maybe that’s it. I also expect that his appetite is up due to the fact that he didn’t have his methotrexate last week. But I am still in the learning process of all of this, so I will just ask the doctor in the morning and see what he says.
On April 18th, Connor will go into his next phase. That phase is called delayed intensification. Just the name itself brings thoughts of a very intense chemo round that has worried me from the beginning. We have been assured that Connor will spend at least some of that phase in the hospital, if not all of it. It will last about 6 weeks long, and it is sure to drain him of all of his strength. He will also be running fevers and could experience a little bit of pain. I only write about this so that the prayers can start now to make that phase as easy as possible. He has been really tough through all of this so far, but there is only so much he can take.
UPDATE: Connor did really well at the doctor. His ANC levels in his blood were once again at 650 so the Methotrexate couldn't be given to him. We were told to just keep monitoring him for a fever and to bring him in if he runs one. But all of his other counts were right in line with where he is supossed to be. The spinal tap and bone marrow went off without a hitch and Connor had a little discomfort as always, but nothing out of the ordinary.
After the procedures were done, Connor has to wait 30 minutes before he can sit up. But this week, Connor just wanted to stay asleep. We had to make him get up when they finally came in and told us they needed the bed. When he left the hospital, he wanted to go bowling, so Michelle took him and Sean. They had a fun afternoon. His next treatment is in 10 days on April 18th. They will check his levels and see if he can get all of the medications. Then on My 1st, he begins delayed intensification. We are planning on at least 7 - 10 days of that month being spent in the hospital. Sean had a good week too. He scored his 3rd goal of the season in hockey this week. It was a nice goal that he went down on the right side, skated in front of the net, stopped in front of the goal and did a nice back hand while keeping 2 defenders at bay. We also found out today that Sean will play his final game at Phillips Arena in downtown Atlanta. For those not familiar with hockey, or downtown Atlanta, that is like playing a game at Madison Square Garden!! That is on the 24th of April. The league he is in is run by the Atlanta Thrashers and several former NHL players and they have worked it out where they will play their last game there. I know that I am more excited at this than Sean is, but I think he will realize how huge this is once he skates out on that ice.
The first 100 mile ride is rapidly approaching. We will be collecting donations until May 1st for the Leukemia Society so please make sure to place your donation today. As of 10:00pm Thursday night, we are at $5610. That is an awesome display of generosity and I am sure we will hit our goal of $20,000. Please visit the website and donate today.
To make your tax deductible donation directly through Harold’s site and to find out more, please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Thursday, April 7, 2005 9:16 PM CDT

I am not very good at all of these dates. I know that I said Connor was going to the doctor on Thursday, and I had a few family members call about that today to see how he did. But, I was wrong. Connor goes in for his 8th bone marrow and 9th spinal tap in the morning.
His appointment is at 8:30am and we will be leaving for the hospital about 7:00am to beat the traffic. We are anticipating a normal day of about 4 to 5 hours. As long as all of the counts are correct, Connor will get all of his medications along with the chemo.
This last week was an exceptional one for Connor. His appetite is way up, although I am not sure why. His spirits are also way up, he seems to have a lot more energy. I know that some of the chemo drugs can do that, so maybe that’s it. I also expect that his appetite is up due to the fact that he didn’t have his methotrexate last week. But I am still in the learning process of all of this, so I will just ask the doctor in the morning and see what he says.
On April 18th, Connor will go into his next phase. That phase is called delayed intensification. Just the name itself brings thoughts of a very intense chemo round that has worried me from the beginning. We have been assured that Connor will spend at least some of that phase in the hospital, if not all of it. It will last about 6 weeks long, and it is sure to drain him of all of his strength. He will also be running fevers and could experience a little bit of pain. I only write about this so that the prayers can start now to make that phase as easy as possible. He has been really tough through all of this so far, but there is only so much he can take.
The first 100 mile ride is rapidly approaching. We will be collecting donations until May 1st for the Leukemia Society so please make sure to place your donation today. As of 10:00pm Thursday night, we are at $5610. That is an awesome display of generosity and I am sure we will hit our goal of $20,000. Please visit the website and donate today.
To make your tax deductible donation directly through Harold’s site and to find out more, please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Friday, April 1, 2005 9:40 PM CST

Another week has past. Connor continues to be in high spirits and has more energy everyday. He continues to drop a little weight, but it is understandable. He is at 41 pounds as of tonight when he went to bed. That is still 3 pounds heavier than on January 7th, and 14 pounds lighter than he was just a month ago. I know there are plenty of people out there just wishing they could drop 14 pounds in a month, but I don’t recommend Connor’s method.
Connor goes back to the doctor on Thursday of next week for his 10 day appointment. On this next trip he will receive a bone marrow test and a spinal tap. Chances are very good that all of his levels will be normal. He has responded very well to all of these treatments, and I am sure that all of you reading this web page and checking on his progress have something to do with it. There have been over 6500 hits on the web page from people all over the country. It touches my heart to see all of the caring for a boy that I know all of you have come to love through my journal and his pictures. He is making the best of a very bad situation.
Each day I watch my 4 year old son make the best of his life. While he knows he has something wrong with his blood, he also knows that with each passing day he is one day closer to being cured. Amazing how a child has taught me to understand that life can be a journey full of smiles or frowns. I guess it just depends on what side of life you want to be on. I choose smiles; I know that’s what Connor chooses everyday.
There is some good news to report to all of you, we have hit the 25% mark on our goal for the Century rides for the Leukemia Society. We are trying to make the total of 25,000 by May 1st. That is a short 30 days from today. I ask that all of you please reach into your hearts and help the Leukemia Society to help all of the families that are affected by this disease. If you haven’t donated yet, please consider making that donation today. Your generosity is greatly appreciated. I will update the site again before his hospital visit on Thursday.

Tuesday, March 29, 2005 2:38 AM EST

Today went about as well as we expected. Connor had low ANC levels in his blood. The ANC levels determine how well he can fight off infection. They are supposed to be over 1000 and they were at 650. That said, Connor didn’t get his Methatrexate today. He did get his Vinchristine and he took another pill that they give him, but that was it. His weight is still down only 1 pound since last week, but no other significant things to talk about.
Connor is still in very good spirits. The doctor did tell us that we have to check him closely during the next 10 days until his next appointment and make sure he isn’t running a fever. His levels should begin to rise back over 1000 in the next 10 days, but they could also stay low and his ability to fight off any types of normal common colds and other childhood illnesses are at risk right now. So we will do just that. He is very aware of his health and talks about the day when his blood is all better. He knows that he will be almost 7 when this happens, but he seems to be OK with that. Again, he seems to have more strength than most adults that I know, including myself.
Connors next appointment is in 10 days on April 7th. He will have another spinal tap and a bone marrow test done at this appointment. Two very painful procedures that he has done well on so far, so I am hoping to stay with that trend. I was able to get him an 8:00am appointment so there shouldn’t be any issues on his eating. But since he barely eats, that won’t be a big deal anyway. Right now please just keep praying that he stays germ free for the next week and a half so he can resume his treatments next time.
I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said they will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 2:15am Tuesday, we are at $4950 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductible donation directly through Harrold's site and to find out more,
please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;
Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Monday, March 14, 2005 7:12 AM CST

Connor had a great weekend. After his rough week a couple of weeks back, he has done really well. No real explanation from the doctors, other than he just had a bacteria that got into his blood.
Connor also had a visitor this week, actually 2 visitors. His Uncle Kevin and his cousin Ryan were here this weekend. While he loves his Uncle, the only one he couldn't get
enough of was his cousin. They played on the trampoline, rode bikes, played every possible sport that Connor could find in the garage and just hung out with each other.
Ryan even took over the reading detail at the house by reading books to both Sean and Connor. And as hard as I tried, my brother wouldn't leave Ryan here.
Connor is now in the next phase of his therapy. This lasts for 60 days and will have him going to the doctor every 10 days instead of every 7 days. He will still get the chemo
drugs every week, and also be on an escalating dose of methatrexate. Connor appetite is also down since coming off the steroids. He seems to always complain about his stomach
hurting, and this could be a side effect of the methotrexate. There can be internal sores that will affect him and his appetite. They can be in his mouth, nose, and other areas, mostly the different cavities. This can be painful at most, and just discomforting at best. I have started giving him Zantac again to help his stomach calm down and hopefully this will impact his eating habits.
All of these drugs that Connor takes, every bone marrow and blood transfusion and the 70 miles round trip to the hospital are very expensive. As I have told all of you in the past, we are lucky to have such good insurance. But the insurance doesn't cover 100% on all of these items. All of the drugs taken at home are only covered about 80%, and these alone are very expensive and it all adds up.
It is hard to believe but we are only 2 months into this 3 year and 2 month ordeal, but I can't remember a time when Connor didn't have cancer. These last 2 months have taken a toll and it has aged me, I have no doubt. Our medical bills are well over $100,000 and climbing everyday. There are a couple of parents that come to this site daily and that have
told me about their cancer experience with their own family, it is hard, but I am assured, as long as he stays in remission, it will get better, and that there will be good and bad days.
The reason I am writing about all of this is to tell all of you about the wonderful help that we have gotten from the Leukemia and Lymphoma Society. Last week a friend told me
that he hadn't given to Harold Bamburgs site yet because he wanted to make sure this money went directly to Connor. I completely understood. Here are just a few things that
this society helps and that go directly to Connor;
- Assist in the payment of drugs not covered by insurance
- Reimbursement for every bone marrow and blood transfusion
- Driving miles to and from hospital
- Parking at hospital
These are just a few ways that we are helped directly by the Leukemia and Lymphoma Society. So again, I ask all of you to please help in anyway that you can to meet our goal.
I also ask anyone with ideas on how we can reach our goals in a different way to send me an e-mail so that I can share it with those that may help.
I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said they will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 7:30am today, we are at $3425 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductible donation directly through Harrold's site and to find out more,
please cut and paste the following into your web browser;
www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;
Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Sunday, March 6, 2005 10:26 PM CST

What a wild week it was. Connor was taken to the hospital on both Wednesday and Thursday with a fevers of over 101, stomach cramps and headaches. Each day he was given medicine and sent home. Thank goodness Connor didn't think 3 was a charm because if there had been a fever on Friday, or over the weekend, he would have been admitted into the hospital.
His appetite has gone way down. Some days he will hardly eat at all, but according to the doctors, this is normal. The biggest concern now is how much he is drinking and going to the bathroom. If he gets dehydrated, he will also be admitted to the hospital. And since his appetite is supressed, his weight keeps falling off. He is about 42 pounds, according to the house scale, and that is just 4 pounds off from where this ordeal began. So far, he is down 13 pounds and those last 4 pounds are still in his cheeks. I want to post a new picture, but since my computer went down 10 days ago, I haven't been able to do it. Hopefully I will get it back this week and I can update the pictures.
Tomorrow should be a relatively easy day. Connor only has to get blood drawn from his port and have chemo administered. His blood levels will be checked to make sure they are at the correct levels. If they are, Connor begins the next phase of his chemo. He will get different drugs for a period of 2 months. If they are correct, it will also be exactly 3 years to the day that Connor will finish his chemotherapy. That will be exactly 13 days before his 7th birthday.
I want to touch on something that I have left on the website for about 10 days. It is the ride for a cure for Leukemia. I just looked at the site and I see it is up to $2325. This is off to a good start, but a little slower than I had hoped for. Even if you can't give a lot, it only takes a lot of people to give a little each, to make the goal. Even $20 will make a difference. So again, I ask that you please find it in your hearts to make a donation this week. We are hoping to reach our goal by May 1st. This only leaves 7 weeks to make it happen. Let's make it happen sooner, rather than later. Also, I have a corporate donation package if your company would like to make a donation. Please send me an e-mail if you would like me to send you a corporate package.

I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said thay will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 7:30pm tonight, we are at $2325 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductable donation directly through Harrold's site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Sunday, March 6, 2005 10:26 PM CST

What a wild week it was. Connor was taken to the hospital on both Wednesday and Thursday with a fevers of over 101, stomach cramps and headaches. Each day he was given medicine and sent home. Thank goodness Connor didn't think 3 was a charm because if there had been a fever on Friday, or over the weekend, he would have been admitted into the hospital.
His appetite has gone way down. Some days he will hardly eat at all, but according to the doctors, this is normal. The biggest concern now is how much he is drinking and going to the bathroom. If he gets dehydrated, he will also be admitted to the hospital. And since his appetite is supressed, his weight keeps falling off. He is about 42 pounds, according to the house scale, and that is just 4 pounds off from where this ordeal began. So far, he is down 13 pounds and those last 4 pounds are still in his cheeks. I want to post a new picture, but since my computer went down 10 days ago, I haven't been able to do it. Hopefully I will get it back this week and I can update the pictures.
Tomorrow should be a relatively easy day. Connor only has to get blood drawn from his port and have chemo administered. His blood levels will be checked to make sure they are at the correct levels. If they are, Connor begins the next phase of his chemo. He will get different drugs for a period of 2 months. If they are correct, it will also be exactly 3 years to the day that Connor will finish his chemotherapy. That will be exactly 13 days before his 7th birthday.
I want to touch on something that I have left on the website for about 10 days. It is the ride for a cure for Leukemia. I just looked at the site and I see it is up to $500. This is off to a good start, but a little slower than I had hoped for. Even if you can't give a lot, it only takes a lot of people to give a little each, to make the goal. Even $20 will make a difference. So again, I ask that you please find it in your hearts to make a donation this week. We are hoping to reach our goal by May 1st. This only leaves 7 weeks to make it happen. Let's make it happen sooner, rather than later. Also, I have a corporate donation package if your company would like to make a donation. Please send me an e-mail if you would like me to send you a corporate package.

I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said thay will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 11:30pm tonight, we are at $500 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductable donation directly through Harrold's site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Thursday, March 3, 2005 7:06 PM CST

For the second day in a row, Connor was taken to the hospital. Each day he has had a fever of over 101. This is the critical temperature that they say he must be brought it. Yesterday, he went and they said that it was bacteria in his blood that was causing the fever. So they gave him an anti-biotic and it went away and he was sent home.
Today, Connor woke up ok, but as the day progressed he began to run a fever over 102. We tried to give him a bath to lower it, but it only brought it down to 100.7. So it was off to the hospital again. He was given the same anti-biotic through his port and once again, his temperature went down and he was sent home.
If Connor gets over 101 tomorrow, he will be admitted again into the hospital and spend a few days. We thought that this might happen, but we were hoping it would take 2 months, not 2 days before he went back in. Connor is also coughing a bit, and he is now taking some Robitussin to help that. He will take that for 3 days and hopefully the cough will subside.

I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said thay will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 8:30pm tonight, we are at $225 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductable donation directly through Harrold's site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Wednesday, March 2, 2005 4:59 AM CST

Today is Wednesday and last night was a little rough. Connor woke up at 3:00am and said he had a headache. For any normal child, you give them a couple of Tylenol and send them back to bed. For a child with leukemia taking chemotherapy drugs you have to take their temperature first, among other things.
The warning signs for children is a fever of 101. Connor had a 100.3 at 3:00am. If it hits 101, he must be hospitalized again. After dropping Sean at school, Connor is going to go to the hospital and get checked up. He is coughing very hard too, so there may be something going on internally that we are unaware of. We mentioned the cough on Monday to the doctors, but there was no reason for alarm since it wasn't accompanied by a fever.
We will know more later and update the site then.


I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said thay will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 9:45pm tonight, we are at $225 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductable donation directly through Harrold's site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Monday, February 28, 2005 8:20 PM CST

Connor did great at the hospital today. All of the tests came out fine. All of the counts are where we want them to be. We were told about the next phase in his treatment plan. Connor will be in phase 3 for this part of his treatment. His treatment will be as follows;
Continue his Bactrim on weekends only at the house. Escalating Methotrexate by port injection along with vinchristine and 1 delayed intensification phase of chemotherapy. After this he will go into a maintenance plan that will last 3 years from next Monday.
He will be required to go to the doctor every 10 days. So it is a little break from the once a week plan he is on now. The reason he has to go into the office is due to the fact that he will be getting his drugs through his port.

I asked all of you to help out Harold Bamberg on his 2 rides to find a cure, I have gotten many calls where people have said thay will make a donation and I really appreciate it. I will be updating all of you on the progress of that site and the amounts we reach. Remember, the goal is $20,000 dollars and it will take each one of you to make that goal a reality. As of 9:45pm tonight, we are at $225 dollars. So we have a long way to go, but I am positive we will reach our goals.

To make your tax deductable donation directly through Harrold's site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg
If a check is preferable, then just make out a check to;
The Leukemia and Lymphoma Society and mail it to;

Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Sunday, February 27, 2005 9:19 PM CST

Weekends are so great for Connor, he gets to play with his brother all day long! There was the issue of the rainy weekend, but they played hockey in the basement, and played out in the driveway between the rainfall.
Tomorrow is a huge day, his appointment is at 10:00am and we find out what arm of the study Connor will fall into. He has to get another spinal tap, and have chemo injected into his port.
I had a neighbor ask me today about the spinal taps. She asked what they were like, and what they did to get the fluid out of Connor. I went through the process and then realized that most of you may not understand how brave he is. As a general description, any women out there that have had an epidural, it is similar. Except he is under a general anesthesia during the process. He is given medicine through his port that puts him to sleep, then they take a very large needle and place it into his back to draw fluids from his spinal cord. That fluid is then analyzed to make sure there is no cancer present. This child is amazing. He is an inspiration to me. The spinal tap Connor gets tomorrow will be his 7th. He has also had bone marrow taken on 5 occasions. Each procedure leaves him sore for about 2 days, but he doesn't complain about it.

Most of you have talked about wanting to be able to do something to help Connor. I am going to take ALL OF YOU up on it. I sent an e-mail out the other day to about 50 people asking to help sponsor a gentleman named Harold Bamberg in 2 bike rides that are 100 miles each. He is riding for a cure for Leukemia and other blood cancers, and he is riding in Connor's name. No greater gift than the gift of ones self to help another in need. Harold is Connor's gift, and I ask all of you that read this website to give a gift to Harold.
One ride is taking place in Cartersville Ga and the other is taking place in Lake Tahoe. Originally I had decided to take these rides, however, I can not take the time needed to train away from my sons. I will however be helping Harold train whenever I can on prepatory rides leading up to the big rides.
Harold has committed to raise 10,000 dollars, but I am raising the bar. I want to reach $20,000. I am aware that this is a big goal, but I know that all of you have big hearts. I will get him part of the way there, and I just need all of you to please help in whatever amount you can. I also ask that you forward his website, and this website to as many of your friends and family that you can so they can help out. All donations are tax deductable.
Connor has received over 5000 hits on this web address in just 2 short months. There are many of you that log in to check his progress and log out without writing a single word, and that is OK. Because the website to donate also allows you to be anonymous in your gift. I am hoping and praying that all of you that read this can find it in your hearts to take that next step and donate what you can.
Thank you for your support on this from the bottom of my heart.
To donate directly through Harrolds site and to find out more, please cut and paste the following into your web browser; www.active.com/donate/tntga/hbamberg If a check is preferable, then just make out a check to The Leukemia and Lymphoma Society and mail it to;
Harold Bamberg
2643 Whispering Pines Drive
Grayson GA 30017
Also to check out the ride information visit www.teamintraining.org/ga

Friday, February 25, 2005 1:20 PM CST

This has been another great week for Connor. His weight continues to come off and energy still ramping up. He weighs about 44 pounds, which is still bigger than most 3 year olds, but he holds it well. It's all in his cheeks!
This week Connor has had some company in the form of one of my sisters and niece that came for a visit. It allows a much needed break and he loves the added attention. Sean loves it too. They have been outside playing with Kathryn, their cousin, when ever the weather permits and that helps them both sleep better at night.
Since Connor has been feeling so much better, it is time to get back on a routine. That said, Michelle will be going back to work on March 8th. While some of you thought that wouldn't happen, we think it is important to get the kids lives back to as normal as possible. We are also anticipating Connor may have to go back into the hospital in April or May. This is not a guarantee, but the new drugs may cause his immune system to react in a way that may get him hospitalized again. Since Michelle is on the Family Medical Leave Act, FMLA, we don't want to use all of the days when we can save them to use them when they are truly needed.
Next week is big. We find out on Monday morning what arm of the treatments Connor will be put on. He gets one more spinal tap, and more chemo into his port on Monday too. That may be the last spinal tap for a while, but the treatment schedule will be clearer on Monday. He will eventually get to the point of only monthly visits. That will make it much easier. Connor is handling it better than us, but I am sure he will be even happier when he only has to go to the hospital once a month.
I hope I don't say this too much, but thank you. From the bottom of our hearts this has been easier because of the nice notes and the outpouring of support from our family, friends and strangers. I will update again on Sunday night after the weekend.

Monday, February 21, 2005 2:20 PM CST

REMISSION! It is official. Connor is now in remission. We are very pleased with this news, but by no means is he out of the woods. There is still a long road to go down.
Let me explain. First of all, remission means his cancer is no longer moving forward and taking over his body. He will still need to have chemotherapy for the next 3 years. He will finish just before his 7th birthday. However, he will start a new regimine in about 2 weeks. This new regimine is still undecided because we have entered Connor into a worldwide study of children with Leukemia. While we definately want Connor to get better, we do not want any other children or parents to go through what we have gone through, and will continue to go through for the next 3 years.
The study consists of 4 arms. One of the arms is the treatment that every child would normally get and achieve results in the 90% area. The other 3 arms of the study should recieve at least 90% but the reason for the study is to adjust the methods in which children are given their drugs and hope we can raise the recovery rate from 90% to something higher. He will still be recieving all of the same drugs, just the method of pills, injections, spinal taps and bone marrow will be adjusted in each arm of the study. I hope this doesn't confuse anyone, if it does, e-mail me and I will try to do a better job on my explanation.
Connor had a great day at the doctor too. He was out of the hospital by 11:00am, his blood counts were all great. His spirits were very good, and he didn't complain one bit. Even the nurses were commenting on his laugh and smile. His is doing more and more of both these days.
I will write more in a couple of days. All of the prayers, thoughts, gifts, dinners, monies collected and everything else that people have provided for us is a debt I hope to someday repay. In the mean time, lets keep the thoughts and prayers coming. Connor still has 1113 days left of treatments before he can truly put this behind him.

Friday, February 18, 2005 6:15 PM CST

Normally I write these updates from my laptop in Word, and then cut and paste into the body of this page. However, my laptop had a serious crash this week and I have not had access to the webpage. This had made me adjust my normal weekly routine and I was not very happy about that. I am sure most of you know what I am talking about.
There are so many of you that tell me this page is a vital link for you to try and understand the disease that has taken over Connor's blood and help you make a little sense of it. You are amazed at his ability to deal with the doctors, the needles, the poking and prodding that goes on everyday that he wakes up or has to go to the hospital for treatments. You say that you are surprised at how he takes his pill everyday, without fail, and without complaining. He is not a complainer. He accepts his cancer, and that has allowed me to accept it too. It is not something he enjoys, but something he must deal with. Quite frankly, he deals with it like it was a rainy day. Sure the rain may affect your plans, but you just adjust the plan and move ahead. I am really a proud dad. Proud of both of my boys and the way they are adjusting their plan.
Connor has had a great week. His weight is down about 8 pounds. He is carrying most of what is left from the steroids in his pudgy face, but he is still handsome! He went for a bike ride this week, he played outside in the driveway, and I even got him to try ice skating with his brother. He didn't last long on the ice, only 3 times around, but the fact that he was willing to try and just got tired out very quickly made it worth it for me. His stamina for exercise will return soon enough.
According to his doctors, Connor should be able to go back to a normal routine after 6 months. That means, if he is in remission and keeps improving, he will be able to play sports, go to school, and do everything that a normal 3 year old does. We are optimistic that he will continue to improve.
I am not unrealistic to think he will never again have to be hospitalized, or that he will never have another kidney stone, or some other unforseen complication, but if that happens, I guess we'll just have to adjust our plans.
UPDATE: Connor has an appointment on Monday morning at 9:30am. He will get another spinal tap, along with chemo put into his port. With any luck, and no complications, I should be out of there by noon and updating the site by the end of the day.
Sean continued on his scoring drive netting his second goal in as many weeks at hockey! It was another slap shot from about 20' feet out. He may really be onto something here. If I don't watch out, he may pass me in scoring one of these days. For those of you that played with me, you know it won't be that long.

Sunday, February 13, 2005 6:37 PM CST

UPDATE AT BOTTOM & NEW PICTURE ATTACHED.
Another pleasant weekend has past. Connor is really starting to look like himself again. I haven’t weighed him yet, but I am sure he is down another pound or two. (As of Friday, he was down 5 pounds) He was playing a lot this weekend. Sean, Connor and I even took a bike ride for about 30 minutes. So his energy level is getting back to where it should be.
Monday will be another spinal tap day. His appointment is at 8:30am so we will leave the house at 7:00am to drop Sean for school and then fight the traffic to the other side of town with Connor. Connor will also get another dose of Vinchristine. This goes in through the port in his chest. His other new drug is a chemo drug that he takes orally every day for the next month. I don’t know many 3 year olds that can swallow a pill the size of an adult aspirin, but he does it everyday. Just one more way this boy amazes me. I know adults that can’t swallow a pill and he does it everyday.
On a lighter note, but as a proud dad I must tell. Sean scored his first goal in ice hockey today! He was about 25 feet out on the right side of the goal and took a slap shot. It went right in! He was so proud of himself, he had to call his Uncle Kevin and Aunt Pat to let them know all about it.
I will have the results back from Connor’s spinal tap on Tuesday, but I will update the site on Monday after we get back from the hospital to let everyone know how he did with his treatments during the day.
UPDATE: Connor went through today with absolutely no issues. His blood counts were great, he had no food issues, and according to his doctor, he is progressing along just fine. I did ask his doctor about Connor’s his pudgy face, and he said it was not an issue. It is the last thing to go back to normal. He has lost 7 pounds, and is now 46 pounds, down from 53. His stomach and appetite are almost back to normal, but he has a few more to lose to get back to where he was when this began.
For those waiting to see the picture of me with a shaved head, apparently, you will be waiting a little bit longer. According to the doctor, Connor has lost about all of the hair he will lose for now. When another future phase of his chemo takes place, around April, he will definitely lose it all and he may also need to be hospitalized again as a precaution to a low immune system. It is a little bit easier knowing that it may be coming, rather than rushing to the ER at 2:00am. But we are still a few months away from that.
I will write more on Friday to update from the week unless there is something to report. Thank you all again, we truly appreciate the notes.

Friday, February 11, 2005 8:27 PM CST

Over and over again, we have been told to take this illness one day at a time. There are many days when this is extremely hard to do. You look at this child and want the next three years and one month to go by with a Jeanne’s blink or a twitch of a nose. Since this is impossible, one day at a time is the only way. Having a week like this week was both rewarding and heartbreaking. The heartbreaking part was finding out about the kidney stone and having to rush Connor to the ER at 2:30am on Sunday night. The kidney stone is still in there, and there is still some minor pain and discomfort at times. But Connor, as he always seems to do, just gets past the bad, and moves on. The good news is we had several rewarding parts.
First, Connor has dropped almost 5 pounds from his enormous 52.8 pounds. He is still a healthy 47.4 pounds, but his appetite has subsided, his stomach has gone way down and his energy level is way up. Another reward is his smile. He brightens up a room when he is smiling. He has an uncanny way to make people feel good and smile along with him. It is a quality only the pure at heart possess. His smile returned in earnest on Thursday. He is laughing a lot more, and wanting to play a lot more too. He was wrestling with me and Sean earlier and having the best time I have seen him have in a while.
There were many days before January 7th that I would tell both of my sons that I want them to stay children forever. “I never want you boys to grow up!” I would hug them and tell them I loved them. I still want my boys to be young forever, but I think I will like the sound of 6 & 8, better than 3 & 5. When that day comes, this illness will be a memory, and all of these notes and your thoughts will be used to inspire one tough little boy as he grows into a man.

Tuesday, February 8, 2005 10:27 PM CST

He is home again!! Connor received his spinal tap, bone marrow and chemotherapy today. While he was in for those procedures, the doctors were going to place a stint up and into his kidney to help pass his kidney stone. At the last minute they decided that they were not going to do this. If Connor was not going in for surgery today, this wouldn’t have been an option, so the doctors felt there was no reason to make it one.
The only small issue today was a delay in his surgery. I have been writing for weeks about his voracious appetite and while he stopped the Decadron last night, his appetite will remain intense for a few more days until it clears from his system. His procedures were initially scheduled for 12:00pm. So they would not let him eat or drink after 12:00 midnight. But 12 noon came and went without the call we were hoping for. They told us the procedure would be delayed until about 1:00pm. Keep in mind, Connor was hysterical crying from 8:00am when he woke up. He wanted food and he wanted it bad. Finally at 12:25pm, with no word from the surgeon to give him the medicine that would knock him out, I went and had a friendly chat with the nurses. I informed them that I was feeding Connor at 12:30pm. There would not be any negotiating on my timeline. Wouldn’t you know it; they were in the room at 12:29pm, drugs in hand. Normally this drug takes about 90 seconds to take effect and Connor is asleep, however, it was more than 15 minutes until he finally passed out. He was so worked up, he fought it the entire way.
For those that have commented on feeling helpless, we are here, right next to this boy, and feel helpless everyday. This is Connor’s fight, we are mere bystanders. It is the little victories that help us through the day. While I was aware that feeding him would have made the surgical procedures impossible, I am also not one that wants to watch my son starve and be so miserable. He is so keenly aware of his illness, but still not sure why mom & dad hold back food and water. I am told this gets easier, but the last 72 hours have been anything but easy. We make it through everyday with the support of those we love and hold dear in our hearts, and those we have never met, leaving words of prayer and kindness.
After leaving the hospital, Connor had one request. He wanted to go to O’Charleys. For those of you not aware of O’Charley’s, it is a restaurant like a Friday’s with very good rolls. Since this request has been made for the past 28 days, I felt obliged to give him this wish. He ate 5 rolls, a bowl of macaroni and cheese and a bowl of fries. We are glad to see his appetite is already waning, a week ago, he would have eaten 5 pieces of chicken too. We still must be cautious of taking him out in public, or allowing houseguests, but 1 splurge seemed the least we could do.
Thanks again for all of the notes. I read them to Connor about every other day. I will update the site again towards the end of the week.

Tuesday, February 8, 2005 8:19 AM CST

The doctor’s are now pretty sure that on top of his cancer, Connor has a kidney stone as well. They did a series of x-rays and then did a CAT scan with contrast that showed a stone in his kidney. This is why his kidneys are swollen and also his liver. So, now that we know where the pain is coming from, Connor is on morphine every 3 hours, or as needed for pain. He took his last steroid at 8:00pm last night and his features should return to normal soon. His hair is still there, although falling out slowly. It is very curly, so it appears thicker than it really is.
At noon today, he goes into surgery for his spinal tap, bone marrow, and chemotherapy. While he is in surgery, the urologist is going to come in and see about putting a stint into his kidney to see if we can get the stone out that way. They have increased the amount of fluids going into his IV and this makes him urinate about every 90 minutes or so. All of this is to try and pass the stone.
Michelle and I are alternating nights at the hospital again. Each one of us stays one night, and lets the other go home for sleep and to spend time with Sean. But I seem to be coming down with a cold, so Michelle may stay at the hospital again tonight so I don’t get him even sicker than he currently is.
To end on a positive note, Connor’s blood looks great. The ANC count was at 760 and we needed it to be over 1000. When we got the results yesterday, he was at 4100! His red count is still in the good area, but a little low. They will continue to monitor it and will only give another transfusion if it drops. His white count looks really good and his platelets are way up. I will update the site again tonight after the procedures are done.
UPDATE: Connor is now in for his procedures. He went in an hour later than he was supossed to and was not happy about not eating all morning. The very good news is...Connor will be released from the hospital today! We are unsure of the time, but he will be home sometime today. I will update this page again tonight.

Monday, February 7, 2005 10:27 AM CST

Here is the latest. Connor was admitted to the hospital this morning with severe abdominal pains. He was given morphene for pain, and will be getting the morphene every 3 hours. The reason for the pain is; Swollen liver, swollen kidneys, a kidney infection, and the bloating of his stomach from all of the weight gain. He is also on anti-biotics for the kidney infection.He will remain in the hospital until all of these items are no longer issues.
On a positive note, his blood came back with good levels. His procedures for the bone marrow and spinal tap were cancelled today, but have been rescheduled for tomorrow morning. It appears as though these will happen and no blood transfusion is needed at this moment.
I know most of you logged on today to hear about good news and the positive results from his tests. I am sorry to disappoint, but we are aware that we will have setbacks on this road. Connor is being very brave and loves the support he gets on this web page. He asked me this question today, "Daddy, who is praying for me?" And I told him, "The list is shorter for those not praying for you."
UPDATE: The doctors now believe that on top of the cancer, Connor has a kidney stone. This is what is causing the pain and discomfort. After a more tests, I am sure we will know for sure. He will have his chemo, spinal tap and bone marrow done tomorrow morning.

Sunday, February 6, 2005 10:13 PM CST

Monday’s are fast becoming the day I least look forward to starting. We will be leaving the house at 7:00am tomorrow and go to the doctor’s office. Since Connor will get a bone marrow and a spinal tap, he is not allowed to eat past 2:00am. This leaves him very irritable.
Both boys got on the scale tonight before going to bed. Sean is 52” tall and weighs 50.4 lbs. Connor is 42” tall and weighed in at 50.8 lbs. I am ready for the Decadron to be a thing of the past. Years ago, I took Decadron for back spasms. I had the weight gain, I had the mood swings, and one other side effect I had was very intense joint pain. This pain was so excruciating, that I eventually went off the drug so I didn’t have to endure the pain. Connor has been lucky and has not had this joint pain. That is, until this past Friday night. He woke up screaming from how bad he hurt. His arms and legs are aching so bad during the day and night, that he just begins to cry. As a parent, this is one of the most horrible things to see. I called the hospital on Saturday and they prescribed some Tylenol with codine. So far this has not proven to work well enough to keep the pain away, so we will ask for something stronger to get through the pain.
His appointment is at 8:30am, he will have his normal blood drawn from his port, chemo injected into his port, and then at about 10:30am he will get his other procedures done. We still need the blood to be at the correct levels to determine if he can move to the next phase. If not, we will be at the hospital every other day checking his levels until he can move on. So needless to say, we are praying and hoping for the best.
I am anticipating about a 6 hour stay at the hospital. After coming back, I will post the update with all of the results from Monday’s tests. Your continued prayers are much appreciated.
UPDATE: I had to take Connor to the Emergency Room at 2:30am with severe abdominal pain. He will not have any procedures done today. We need to find out what is causing the pain. It is now 6:00am and I don't expect to update the site until tonight. Connor is being admitted back into the hospital today.

Friday, February 4, 2005 10:13 AM CST

Another week has come and gone. Connor is still charging ahead. As he continues to eat and gain more and more weight, I find him to be a bit lethargic, but all in all, he is still in great spirits. I derive most of my strength and courage from watching him tackle this disease.
This past Wednesday night was the first night Connor slept through the night. Well he sort of slept through it. He went to bed at his normal bedtime of 7:30pm, and was up at midnight to eat. After he went back to bed, he stayed asleep until 6:30am. This has not been his normal routine since beginning the steroids and chemo, but I was hoping a new trend would start. Last night started out really well. Connor went to bed at 7:30pm and I didn’t have to feed him until 1:00am. I was hoping he would stay asleep the rest of the night, but unfortunately, he was up on the hour for the rest of the evening. He catches some catnaps during the day, as he is doing right now, and this enables us to either nap, or to complete some work.
Monday is approaching with a lot of anticipation. Connor will be on his 28th day for chemotherapy and we will be moving into the more intense 2nd phase. He will begin to have weekly spinal taps, bone marrow and chemotherapy. His drugs will change a bit and he will no longer take the Decadron and begin a new regimen of different needles and pills. Of course, his blood levels must be all in the right places for him to move forward to this next phase. We are all very hopeful.
About 5 years ago, I wrote a letter to my dad, and I told him how I had so few role models growing up. I said that I had 2 great older brothers to look up to, and also my dad. He was, and still is a driving force in my life. I believe I kept my role models in my family because they had all accomplished so much and why look to a sports hero when I had all the heroes I needed under the roof of the home I was raised in. Watching my son go through this, and seeing his strength, and his resilience, I have added a new hero to my very short list. And once again, I didn’t have to go outside my home to find them. I put my other son on this list as well. His shear ability to deal with his brothers’ illness, and his ability to understand it, baffles me everyday. He is wise beyond his years, and I hope he still continues to have this understanding of people when he is older and dealing with his own family.
As the days come and go by over the rest of my life, I will always think about my sons. If I am ever having a bad day, I will look at how they handled this powerful issue, and just played the hands they were dealt.

Tuesday, February 1, 2005 10:44 AM CST

As most of you can imagine, I spend countless hours on the computer looking at websites trying to understand the disease that has taken over Connor’s body. While he is improving and continues to do so daily, I thought this was a great way to let other parents know a few facts for themselves. I also wanted to share an interesting fact about the insurance that we have that will help to pay for all of the bills for this cancer.

First some facts
• Each day, 46 children are diagnosed with cancer
• One in 330 children will develop cancer by age 20
• Although cure rates are steadily increasing, 35% of children will die
• Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined

None of these facts are here to scare anyone. But I was very surprised when I read them. In the beginning, I thought I should start buying more lottery tickets because it had to be one in a million that Connor would get this. But one in 330 is a little lower than I thought. There are many more facts out there on a very good web site that the hospital social worker gave to us. It is www.candlelighters.org and I recommend it highly. I am even going to add it as a link to the bottom of Connors website. This website is designed for kids and their families to help us get through this tough time, and answer some of the tough questions. I know that there are more questions than answers out there, and this site will help any of you answer them.
My second point today is about insurance. In the past 5 days, we have received our first 2 bills. One was for the 7 day hospital stay, and the second was for the surgery to put in Connor’s port. The bills come to almost $50,000. I don’t write this because I am asking for money, quite the contrary. We have very good insurance. The reason I write this is due to another plan that I picked up about 10 years ago when I got out of the Marine Corps. I purchased a cancer protection plan.
At the time, I bought this plan for me. Not for my kids. But as it turns out, it is a family plan. When we switched over to Michelle carrying the insurance, she continued the family cancer protection plan. This plan is only $16 dollars per month. With some quick math, I figure I have paid $1728 towards this plan over the past 9 years. In hindsight, it is well worth it.
In the first few days of Connor’s diagnosis, we met with a Social Worker from the hospital. She told us that many families go bankrupt during this crisis, or at the very least, go through some serious struggles financially. In the beginning, I was very curious why they wanted to know about my financial situation, but seeing these first few bills, I now know why.
So as all of you pray for Connor, I in return will pray for you and your families that you never have to go through this ordeal. But for those of you that don’t even know that this may one day affect your life, I will pray that you are as prepared as we were to handle it. From an emotional standpoint, you can never be prepared, but financially, you can look to the future and make sure it doesn’t affect you. If you are thinking that you can’t afford to get the cancer protection, please look at the picture above this note and tell me how you can’t afford it.

Monday, January 31, 2005 8:23 AM CST

(This is updated, I added the results from hospital at the bottom.) Last Monday, after Connor’s doctor appointment, I left on my first business trip since finding out about Connor’s Leukemia. Seeing him everyday doesn’t allow me the perspective of seeing the changes his body is going through. When I arrived home at midnight last night, Connor was fast asleep. When I walked into his room I was shocked to see him. The week away has provided me that unique perspective of seeing him for the first time. His face, hands and body are swollen. He has ballooned up to a whopping 49 pounds. His brother Sean is 49 ½ pounds. He is also 10 inches taller than Connor so he wears it much better.
After taking the new picture that will be posted in a little while, I was told not to post it. Only because we don’t want all of you to see that handsome young guy on the opening page of the web and then see what he looks like now. But I want all of you to see what cancer can do. I want all of you to think about your kids when you tuck them in to bed tonight and realize that no matter how frustrated you have even been with them, they are healthy. I have often used the words, “I am happy to have 2 healthy boys”. I believe these are words we take for granted sometimes. Truth is, I am happy to have 2 boys. They make me smile, they have made me cry, and they are sure to make me frustrated. But I am just happy to have them, in good health and bad. I have posted the picture, not for you to remember Connor this way, but to let you see how brave this little guy is and because I know that I do not have the intestinal fortitude to go through what my son goes through everyday. When his steroid regimen is complete on February 7th, he should lose the weight he has gained.
Since today is Monday, Connor has another appointment. Today will be a relatively easy day. His appointment is at 1:30pm and he only needs to have his blood drawn and checked and then an overall check-up. Next week is the rough week. This will be the last week of the first month. Connor will need another spinal tap, bone marrow and complete blood work. These days are exhausting, but we just go at them one day at a time. I will post the results of his blood work later on today.
We just returned from the hospital. Connor had a very good day. His white count remains low and his platelets are through the roof. His red blood count is still a little low. They are not sure, but they may do another blood transfusion next Monday to increase his red count. He will be checked next Monday to see if this is needed. He will also get another spinal tap and bone marrow next week and then move into the next phase of his chemo therapy. The only possible setback could be if Connor doesn’t move over 1000 on his ANC count. Currently he is at 760. The ANC measures his ability to fight off infection. If the ANC remains lower than 1000, Connor will be extended on his first months medicine until all counts are perfect. We are very optimistic that he will continue to progress and all of his counts will be ok.
The second month involves a weekly spinal tap, bone marrow and chemo drugs. We have to wait until next week to find out what path he will go down. The good thing is the steroids will stop and we shouldn’t have to deal with his appetite for much longer. Once he loses the weight, I will get a new picture up that all of you will recognize.

Tuesday, January 25, 2005 1:41 PM CST

Another action packed day at the house. First of all, Sean has had a cough for a couple of days so we decided to take him to the doctor this morning. Connor’s doctors made it very clear to keep him away from any sickness and especially other kids during the first month. So, since we can’t separate the two boys, we felt the best thing to do was to be safe and get him to his pediatrician. It turns out that this was the smart thing to do. Sean was diagnosed with strep throat. Since this is extremely contagious, and could cause a major illness in Connor, we are glad to have caught it in time. He is now on antibiotics and will not be contagious after 24 hours. So 1 night sleeping in the yard should be fine. I am just kidding about that but I am in a very good mood today so I can joke.
The reason for my upbeat mood is because the doctor just called to tell us that Connor’s cancer in his bone marrow is LESS than 1%. This is the news we have been waiting on for a long time. He still has cancer, and he will still need to go through the chemo for the next 3 years, 1 month and 1 week, but it is a promising sign that he is reacting well to the treatments so far and that he is on the road to beating this darn disease. It is not to say there won’t be relapses, or other bumps on the way, but what a great thing to hear to get this day off on the right start.
We are so very grateful for all of the prayers and thoughts that go out to Connor and our family daily. It doesn’t go unnoticed that these prayer chains have had a definite effect on his road towards recovery. We ask that you continue to pray for his recovery.

Monday, January 24, 2005 7:50 PM CST

Another good weekend has come and gone. Connor is still eating like a champ. So much so that on Sunday night he ate until he threw up. But he is still handling all of this very well. As all of you know we had our latest bone marrow today. Connor did extremely well except for not eating. His appointment was at 10:30am so he wasn’t allowed any food or drink after 2:00am. He cried for most of the morning, but not because of pain or discomfort. It is out of shear hunger.
His blood test results came back very good. His white blood count remained the same, his red blood count was up and his platelet count has soared into the normal range for a healthy young boy. He also gained another pound since Tuesday’s appointment. Unfortunately we won’t have the bone marrow test results until tomorrow night, but we are hopeful for a less than 5% result.
This morning was very surreal for me. While the doctors have told us that Connor’s hair will fall out eventually, I guess I wasn’t fully prepared for this morning when I was combing his hair and some of it fell out in my hands. Connor is aware it will fall out, but he is not fazed by it. I am going to take him this weekend for our first of a series of haircuts to make it shorter and shorter. As I said in other e-mails, I will be right there with him cutting my hair shorter too.
Since the results will not be ready until tomorrow night, I will not update until about 8:00pm on Tuesday. We want to thank all of you again and checking on his progress, his web site his produced almost 2500 hits in less than 2 weeks and over 30 pages of well wishes. I will update tomorrow night.

Friday, January 21, 2005 5:33 PM CST

After 11 hours out of the house, we just made it home. We left the house at 7:00am and arrived at the hospital at 8:30am. Connor was taken into the back by 9:30am and had his port accessed. The results told us a few things; first, on a positive note, his white count was lower than it was just 3 days ago. Second, Connor has gained 3 ½ lbs since Tuesday! The steroids are really proving to do exactly what the doctors have said all along. He will gain weight. The third thing we found out is that the platelets and the red cells were both lower than 3 days ago. So, as expected Connor needed both transfusions today.
He began the transfusions at about 10:00am and we did not complete them until about 4:00pm. He did sleep through about 4 hours of the procedures. That was nice since he needs the rest. Last night he was up at 12:30am and 3:30am looking for food, (and getting it) on each occasion. So he was a little tired out.
His doctor came in and told us that he will have another bone marrow check on Monday when Connor comes in for treatment. We need the results to be below 5% or he has told us Connor will be classified as a slow responder. If this is the case, he will have to get a more intense treatment session schedule. So we hope and pray for the best. His test results on Monday should be very promising on the platelets and red counts due to the transfusions today. His white counts continue to improve with each visit, and while his bone marrow results have steadily improved, apparently it is not good enough so far. So dramatic results are needed for Mondays test.
As for Connor, he continues to be the strongest in the group. He has started to ask a lot of questions, and I am answering them as truthfully as I can for a 3 year old to understand. He doesn’t like the hospital, but he is understanding of the fact that he has to go and that they can help his blood get better. He has asked about his hair falling out, and I have told him it will. I have also promised to shave mine when his comes out. I did ask Sean if he would shave his too, and he said, “NO WAY!!! I am glad I didn’t get that sickness.” So he does love his brother, but he does have his limits. I will write more on Monday after the test results are back. And I will add some new pictures to the site next week.
Keep the prayers coming!!

Thursday, January 20, 2005 9:20 PM CST

We got Connor’s spinal tap and bone marrow results back today. The spinal tap came back, as it did last time, with no cancer in his spine. The bone marrow was also promising with 34% of the cells in the bone marrow having leukemia. The first test Connor had came back with 51% having cancer. So he is headed in the right direction. We have been told by the doctors that we need them to be below 5%. So he does have some work in front of him.
Tomorrow is a crucial day. He has an 8:30 appointment tomorrow to have his blood drawn again to check his platelets and red blood count. Both were low on Monday and he will be tested first thing in the morning to see if there were any significant changes over the past 3 days since his last dose of chemo. If there was not, he will have 2 transfusions tomorrow. The first for platelets and the second for the red blood. The last time he had this done it took 4 hours for the transfusion. And it was done overnight while he slept. So I am hoping that he will be patient and be ready for a long day. He went to bed early tonight and hopefully will be well rested for tomorrow.
If the counts come back elevated, we may have an early day. I am hoping for that, but preparing for a very long day at the hospital.
Thanks again for all of the notes. They have a very special meaning to all that read them. I took the liberty of copying them into a Word document and I was shocked to find that there are 25 pages! It did surprise me at first, but anyone that has ever met Connor knows he is special and anyone that meets him falls in love with him. For those of you that haven’t met Connor, please read the notes and you will get a great sense of understanding how wonderful this little man is. After he beats this, and he will beat this, I will have a party that all of you are invited to. That will give you the opportunity to fall in love with him too.

Tuesday, January 18, 2005 5:00 PM CST

Today had some good, and some bad. Unfortunately, we started out with bad. Connor’s appetite has really gotten out of control with the Decadron that he is taking. It is not uncommon for him to sit and eat an adult size portion of chicken or macaroni and cheese and then ask for more. It is not uncommon for him to wake up at 2:00am and ask for 5 pieces of chicken nuggets. He is drinking large quantities of milk and juices. Nothing makes it past his mouth, he is an eating machine!
The problem with that is the minor surgery he had today. As with any surgery, you can’t eat or drink before the procedure. But a 3 year old on an eating mission doesn’t really understand that. He just knows he is hungry and thirsty. So when he decided that 5:00am was a good time to wake up, so did the rest of us. And he was hungry. When I told him no, he started to cry. And cry. And cry some more.
His appointment was not until 9:30am, but since Atlanta is recognized for its rush hours, we left the house at 8:00am. We arrived at the doctor at 9:20am and were not taken in until 10:45am. The whining and crying I mentioned earlier was going on this entire time. It was gut wrenching.
They put the line into the port without incident and drew his blood. They gave him his chemo at the same time. When the lab results were back, we were a little disappointed. While his white count, (the leukemia) was way down, so were his red count and his platelets. What this means to us is that he needs 2 more blood and platelet transfusions. We are taking him back to the doctors’ office on Friday morning, (at 8:00am this time) and we are going to access the port again, draw more blood and then start the 2 separate transfusions. The only positive thing about this is that we have been told he can eat before it.
After that we went to the day surgery clinic for the spinal tap and the bone marrow check. The results from these tests will not be available to us until tomorrow. He was a real trooper through these procedures. Especially after they gave him a teaspoon sized drink of some pink liquid. Now I do not know what this pink drink is, but I do know all parents should be administered this potion within minutes of hearing that their child has any type of disease. Whatever this potion was has Connor in the best of moods within minutes. Not a single care in the world. As hard as I tried, they would not let me have any.
We finally left the office at 2:15pm and headed to the nearest Burger King. On the way there he ate a sleeve of Ritz crackers, 1 Sunny D drink, 1 fruit punch drink, and half a pop tart. Then we got to Burger King and he ate a 6 piece chicken nugget meal and fries and a large chocolate milk that we had to stop at another store for. My boy was finally happy.
So the next day is Friday for the transfusions and then back on Monday for another spinal tap and bone marrow. And so it begins…

Monday, January 17, 2005 6:32 PM CST

A big day awaits us all on Tuesday. Connor will go in for a bone marrow, spinal tap and another dose of the chemo drugs. His appointment is at 9:30am. He will have to go to the day surgery clinic at Childrens Hospital of Atlanta. And since he will go under gereral anesthesia, he can't eat after midnight, or drink after 6am. Since he will pass both of these milestones while he is asleep, it should prove to be an interesting morning.
What we are hoping to find out is that the white blood cell count is still continuing to drop, while his red is up and his platelet count is also up. If this is the case, it will continue to be a very positive sign that Connor is headed towards remission. I can not even let myself imagine the alternative.
We will have the results by the end of the day, and I will be on here tomorrow night to update. I will also be adding a new picture tonight of Sean and Connor sitting together today. They draw great strength from one another, and I draw from that.
Keep the prayer chains and thoughts towards a speedy remission. Thank you

Saturday, January 15, 2005 7:17 PM CST

Well the first full day in in the bag. It was a very busy day for Connor and family. When he first arrived home from the hospital, the first thing he did was look for Sean to hug. Sean was very happy to see his best friend walk through the door.
The interesting thing about the boys is that they are truly best friends. They do look out for one another and they were always asking to see each other when Connor was in the hospital. On the day Connor recieved those 2 shots in his legs, he was taken to the prize box by the nurse. He was so happy that he recieved 2 prizes, (1 for each shot) because he said he wanted to give one of the prizes to Sean when he got home for being such a great big brother. He gave him a white match box car, Connor kept the motorcycle. The 2 boys have been inseperable since arriving home. Even when Connor isn't feeling well, it is Sean that lays down beside him quietly and asks him if he is feeling OK. It makes me proud to be their dad.
There were a few tired moments today. Connor has had some pains in his stomach being caused by the chemo and he is also beginning to experience the tingling, or itching, sensations that is a side effect of the Vinchristine chemo drugs. His nerve endings are being affected by this drug and are even breaking down. This will occur for the duration of the chemo and a three year old has a tough time telling us what the sensation is. He just knows he is uncomfortable.
Last night he was in bed by 8pm and up at 4:30am. This is not his usual pattern, but we are hoping he gets back on track soon. He also has some pain in his stomach that has caused him to vomit. We called the doctor, and again, just a side effect. Our crash course in Leukemia is very trying, but we hope to learn as much as we can, as soon as we can.
Many of you have asked how we are holding up. And for those that know me personally, you know I am not one to share much emotion. This journal is as much for us as it is for you. Each of us steals the moments we need to get our heads on straight to go home to our 2 kids and let them know we are going to make it through this. I spent about 4 hours out today that were much needed. It is time spent where I can just clear my head and prepare for the rest of the day. These were the best 4 hours of the week for me. Tomorrow, Michelle will do the same and I will take the boys.
Each day I sign on and I check the messages written for Connor. They are greatly appreciated, and I do read them to Connor. He is still not sure why you are all writing him, but again, I will print these pages out and save them for him so that when he is old enough to understand, he will appreciate it even more.
Tuesday is the next big day. He will be admitted into "Day Surgery" at Childrens Hospital and get a bone marrow, spinal tap and more chemo done. So far he is taking his pills and all meds just fine. The problem is, sometimes the medicine is worse than the disease.
Thank you all again.

Friday, January 14, 2005 12:53 AM CST

HE'S HOME!! Connor left the hospital today at 12 noon. He is in great spirits. The first thing he did in the car was fall asleep and when he got out, he wanted to ride his bike. Unfortunately, for now, there is no bike riding.
His white count is still down, his red is up, but his platelet cound has dropped again. This is normal, but it will determine what Connor can and can't do. So it is Dad's job to explain the do's and don'ts of having cancer to a 3 year old. Wish me luck.
It is hard to believe that this 3 year old boy's life changed in the blink of an eye just 7 days ago. And while he is home from the hospital, he is far from being out of danger. His chemotherapy as an out-patient begins on Tuesday, and goes on for another 1150 days of his life. He will be turning 7 when this ordeal is finally over. We will take each of these days one day at a time. The hardest part will be the next 3 weeks. They are critical to see if his cancer will go into remission from the chemo. While all signs are hopeful, we need the continued prayers of family and friends to make sure this happens. Our support network runs deep, deeper than I could have ever imagined. Connor is too young to understand this disease right now, but the notes on here will be kept to remind him of the love in his life. I want him to beat this and look back on these notes and truly make a difference in the lives of others when he gets older. All of you are certainly making a difference in his life now.
I also want to thank all of the people at Dyer Elementary that took up collections for Connor. They will be put towards the costs of items and services that are not covered by his insurance. All of us sincerely appreciate it.

Thursday, January 13, 2005 1:13 PM CST

Connor has proven once again to be tougher than his parents through all of this. The shot he got today was actually 2 shots, one in each thigh, given simultaneously. While I couldn't bear to look, he took these 2 huge needles and didn't even cry!
He is now off of his IV and is now just taking pills and other oral medications. His blood pressure has been a little on the high side, so they are now monitoring that. If that can stay down, he should be getting out of the hospital by 3pm on Friday. Just in time for rush hour traffic in Atlanta!
I will be adding more pictures tonight from his first few days in the hospital, he is excited about going home tomorrow. I also brought him to the computer room in the hospital last night and read all of the wonderful notes his friends and family have left. He is excited about them and still isn't sure why his pictures are in a computer here at the hospital!
He will begin outpatient Chemotherapy on Tuesday of next week, however, since there is a holiday on Monday, he will need to go to the surgery clinic to have his bone marrow and spinal tap done on Tuesday morning.
My family wants to express our sincere gratitude for all of the nice notes and cards. They have been an enormous help to us all.

Wednesday, January 12, 2005 3:19 PM CST

Connor is doing well today. Last night was the first night he slept through the night since Friday. Tomorrow, (Thursday) is a big day for him. He will get a shot in his leg that is supposed to be a little on the painful side. This is a normal part of his chemotherapy, but it is a part we have been warned about.
Today he seems fine, he has a lot of energy due to a drug called Decadron. This is a steroid that is used to kill some of the cancer cells. But this drug is also a steriod and has a tendancy to make you have plenty of energy, and be very hungry. When this started, Connor weighed in at a healthy 42lbs. The doctors have said not to be surprised if he gains another 10 over the next 30 days. So, a 50 pound 3 year old isn't that abnormal right? Todays breakfast was 3 bowls of Fruit Loops, 4 French toast sticks, 1 banana and a chocolate milk to wash it all down. But with all of the added energy, he will get back to his fighting weight soon after the decadron stops in a month.
We are still optimistic for a Friday homecoming. I should be able to get another note on here tomorrow to let everyone know what it looks like.
We want to again thank everyone for their thoughts and prayers, they are all working so keep them up!! Some of the notes that we have recieved have talked about wanting to do something for our family. And also a feeling of hopelessness for those of you that are far away. We want to let you know that the support on this web site, the cards and e-mails are very generous and are doing more than you can imagine. They really help to boost our morale. So again, thanks for everything all of you are doing and I will write more soon.

Tuesday, January 11, 2005 5:02 PM CST

Connor was diagnosed on Friday afternoon, January 7th 2005 with Childhood Cancer. His form of Cancer is ALL. ALL is short for Acute Lymphoblastic Leukemia. His sub type is B-Precursor.
On Monday, January 10th, Connor went into surgery at 10am to have a port put in his chest. A port is a small device placed under the skin in his chest. This port is where Connor will recieve 90% of all his Chemotherapy.
During his surgery, Connor also recieved his first bone marrow check, and also a spinal tap. These were done to check the amount of cancer currently in his system. The spinal tap results were excellent. They came back with no cancer cells in Connor's spinal cord. And the Bone Marrow test showed cancer, but this can be erraticated with the Chemo.
After surgery, Connor recieved his first doses of Chemo, and he reacted very well to them. His white blood count is down, while his red is up. His platelets are also way up. All good signs that Connor will have a complete recovery.
This will be a long recovery. While the chemo is going great, he will undergo chemo for the next 3 years and 2 months. This will be a long road to go down, but we are confident he will make it.
We want to thank everyone for their support and prayers, and we appreciate everything that Connor's friends have done for him. The first month is critical for Connor. He cannot have visitors, and must stay away from as many germs as possible. So while we wish we could invite everone over that has asked about him, this is not possible right now. In time, as he gets better, he will be able to see guests on a limited basis. Our family appreciates your thoughts and hope you can understand this as we go through this difficult time.
Connor is scheduled to be out of the hospital on Friday, January 14th. Please limit phone calls to the room between 9:00am and 8:00pm.

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