Dad's Diary

The Beginning June 21, 2003 - August 31, 2003 Diagnosis, Induction, Stem Cell Collection	Induction Sept. 1, 2003 - Nov. 30, 2003 Induction, Surgery	Transplant Dec. 1, 2003 - Feb. 28, 2004 Transplant, Radiation
Antibodies (CH14.18) Mar. 1, 2004 - June 30, 2004 ANBL0032, Accutane, CH14.18	More Antibodies (CH14.18) July 1, 2004 - Sep. 30, 2004 ANBL0032, Accutane, CH14.18	Relapse? Oct. 1, 2004 - Dec. 31, 2004 Relapse, chemotherapy
Antibodies (3F8) Year 1 January 1, 2005 - December 31, 2005 Sloan Kettering, 3F8, Radiation	Antibodies (3F8) Year 2 January 1, 2006 - June 30, 2007 Sloan Kettering, 3F8	Remission July 1, 2007 - Current Looking for answers

Well, I truly believe that Sydney is on the road to recovery. All of the immediate family is here and Sydney has been taking advantage of the fact that everyone is here to see her. For the most part her color is returning and she seems to have a ton of energy. She is running constantly and she can easily make me loose my breath just trying to follow her around. Although I have been ostracized out to the guesthouse along with my brother-in-law to remodel it, whenever we get a chance to take a break and come back in Sydney is still going full blast. I wish I had her energy. My wife was nice enough to allow me to take the day off today so I am excited to have a full day to play with Sydney again. I just hope I can last.

Sydney could not have had a better holiday weekend. She spent time with all of her family and as a special treat it was Gami's (Sydney's Great Grand Mother) birthday. She did so much over the weekend I can't think of anything that she did not do. She once again was a little energizer bunny. My wife let me off of work on the guest house yesterday so I got to spend much of the time with them. I don't remember seeing Sydney quite so happy. One of the neat things that Lynley did over the weekend was help Sydney make some paintings for our bedroom. She went out and bought several tubes of acrylic paint in the colors of our bedroom and two artist canvasses. She then let Sydney go on a creative terror and paint some abstract art for us. We hung them up on the wall in our bedroom and they look great. They may be paintings that only parents could love, but personally, I have always felt that most abstract art that I saw in museums was the same way. The benefits of our abstract art are that the colors match our room perfectly and we have the honor of living with our artist. Sydney is quite proud of her work and takes every opportunity to tell everyone that those paintings are her masterpieces.

Like I said, emotionally and behaviorally, Sydney seems to be in top notch condition. Her medical status, however, continues to concern both Lynley and I. Unfortunately, we just are not seeing any signs of her blood recovering. She still appears pale (coloration in her face and extremities is usually very short-lived) although she is extremely active. We are very concerned and anxious to get back on the chemo bus. We are hoping and praying that we see some drastic changes over the next couple of days because we don't think we could bear another weekend of waiting. Like I said on the first day of this diary, I get comfort from the fact that we are doing something and this waiting is about to drive me crazy. I want to get back. I want to fight this cancer. I do not want to give it even a moment of rest. I want it obliterated.

Yesterday was just like many of the days before for Sydney. She is still pale but shows no other signs of being sick. She is fun to be around, playful, and a new occurrence, thoughtful. I really enjoy every minute of watching her and it is amazing to watch her little brain pick up new things. She is getting much better at her "pleases" and "thank yous" and it is really funny to hear her say "Cuse Me" after sneezing or "Cuse Daddy" after I sneeze. She is very watchful and mindful of others making sure we all have the opportunity to participate in her games of make believe or while we are sharing at the dinner table. It is funny, she is considerate in a very demanding way. Last night she gave me her napkin for my lap as she had noticed that I didn't have one. How very sweet. BUT.. she did demand that I got up to get her a new napkin for herself. It is these little occurrences that make it so much easier to get through the days.

As of late, Lynley and I have been on a crusade to figure out what causes Neuroblastoma. It has become a game to us really. I think as a parent of a child with Neuroblastoma you always feel guilt on some level. No matter how much the research dictates and the doctors tell us that Sydney's cancer is not because of something we did, the fact of the matter is that Sydney is our blood, we created her, we nurtured her and we have and continue to raise her. There is no aspect of her life that we did not have some part in. So, no matter what we see and hear from others, on some emotional level there is always some guilt. Was it the mold we had in our house, was it the fact that we micro waved her milk to make it warm, was it the tap water that we used in her formula. There are a thousand different things we have thought of and knowing that it is probably not related to one event but rather a combination of events we have generated millions of possibilities. For me, the guilt isn't by any means unbearable. I have done my very best and will continue to for the rest of my days. I just wish I knew. I know I can't take back what has happened but it just would be so much easier if I understood what happened. Whether it is something I did or something I didn't, whether it is genetic or just a freak of nature, whether it was my wife and I or somebody else; I would just like to know.

At 2:30 PM today we go back in to the oncology clinic to see if Sydney's blood has recovered. I have been very supportive of Sydney's low blood count condition but I have had it. I, now, officially demand that Sydney's counts rise. I am no longer supportive of her bloods poor behavior. The time is now. Think of this as a call to action. I don't care what it takes. If her blood counts aren't at the appropriate level I am considering a "sit in" in the Doctor's office and demand that her counts rise. It is time for swift, aggressive action.

Now that you blood cells realize that I mean business, grab your wife or husband blood cells and start reproducing. We need an army here. We need all of you to stand up and fight for your lives. I know that there will be losses in this war but it is important for "bloodkind" that you work together, white blood cells, red blood cells and platelets alike. Join your brothers in arms. It is time to unite. It is time to stand up and fight. It is time to defeat the blue cell army (Neuroblastoma) once and for all. I am here to guide you and I am standing by your side. If you need reinforcements I will transfuse them. If you need antibiotics in your arsenal I will provide them. But now is the time. It is now or never. Your rest is over and it is time to fight.

So, all this time, all I had needed to do was have a stern talk with Sydney's blood cells. I wish I had known much earlier. It would have saved much worry and anguish. But, yes, finally at 6:00PM last night we were admitted back into Cooks for our fourth round of chemo. Sydney's counts were good but she still needed a blood transfusion. Apparently the red blood cells didn't listen to me as closely as my brave little platelets and white blood cells. That is okay though, I told them I would send in reinforcements as needed. Sydney started her CAV (Cytoxin, Doxorubicin, Vincristine) cocktail in the wee hours this morning and seems to be doing very well with the exception of waking up at about 5:00AM this morning and asking politely to watch Bambi (twice so far). She is in great spirits. She is very sweet and she is talking constantly. Mostly she is making cute little comments about what is going on around her. For the first time, we are in the South wing of the Oncology ward which is very new to us and a little disconcerting as we have to learn new routines, new nurses, etc. As usual with this place, with the exception of being in a new environment, I can not think of anything negative to say about this place. The nurses are confident caring and reassuring. It is time to play with Sydney. We can chat later...

As this diary is not only for me and it is also for my daughter on her eighteenth birthday I came across this today. It was in an email I received from a friend and I thought it encapsulated many of the things I would like her to realize and learn. I also know that she may not listen to her daddy when she is a teenager so here it is in another's words:

Sydney is a little slower today. She seems to be a little tired and her appetite has decreased. She still show flashes of play and exuberance but not as much as previous days. She slept well through the night and we are hoping that she naps peacefully today. We are officially finished with the cytoxin portion of our cocktail and her continuous infusion of vincristine and doxorubycin will continue into early Monday morning.

Dr. Eames came by this morning to check Sydney and we enjoyed talking to her, as always. She says Sydney is progressing as expected. To update what we know at this point:

1. Sydney's stem cells that we collected a little over a month ago are clean. No neuroblastoma was detected. Very good news.

2. Her EKG and ECHO were normal although one of the test showed some inconsistencies. Because the other test did not confirm the problem the doctors do not believe it was an issue.

3. We are expecting Sydney's surgery near the end of October or the beginning of November. This surgery will be to remove any existing tumor. If all goes as planned we will be having Sydney's stem cell transplant in the beginning to middle part of December. Unfortunately we will be spending Christmas in isolation in the bone marrow unit. The important thing is that we are together. Santa Claus, please take note of this.

Hmmm... Where do I start? I guess I shall begin by saying that I lied to my diary. Well, maybe "lie" is too strong of a word. I can say that I deliberately left out certain facts. I told a partial truth. But, in my defense, it was Lynley's fault. So here goes...

I have to take you back to the time just as we began this journey with neuroblastoma. Everything in the world was coming at us at once. We were trying to digest everything from cancer literature to our own feelings and emotions. On about day 10 of our journey Lynley realized that she could very well be pregnant. After a midnight breakout from the hospital to run to the store for a pregnancy test (and then another run for ten more tests for confirmation) Lynley discovered that she was indeed pregnant. A meeting and ultrasound the next morning with her OBGYN confirmed the diagnosis. Not all of the information was good however. In the battery of tests that we had been through with Sydney during her diagnosis Lynley had been exposed to radiation from both the CT scan and the bone scan. Additionally, the stress of our situation added another burden for Lynley and her pregnancy was considered high risk. Luckily, neuroblastoma is not known to be hereditary but the possibility of her carrying a child full term was not likely. We were told the next couple of months would be the most critical and she would be watched closely. At that time I had a magnitude of feelings going through my mind. Another child was something that we had discussed prior to Sydney's diagnosis and in many ways it was planned. But now, at that moment, we were both happy but also felt -- "What could make this process any harder?" (By the way, upon reflection we comforted ourselves with the fact that it was not twins - that would have been harder. Triplets was not even a consideration as that would have sent us to the funny farm.) I was, and am, so happy at the thought of having another child but the stress and gravity of the situation makes it bitter sweet.

Lynley has followed her OBGYN's advice to the letter and here we sit at the end of the first trimester with a healthy baby in her tummy. The child has been codenamed "Rice" as that was the size of her/him at our first ultrasound. Baby Rice is now the size of a walnut but we are sticking with the codename for the time being. Our newest addition to the family has all of her/his fingers and toes and a solid heartbeat. We continue to pray and hope for success. So, on March 10, 2004 we should be bearing onto the world yet another Dungan child (our apologies) and a playmate and sibling for Sydney. I don't know what it means but Sydney has told us that she has a baby in her tummy as well. (That could make things really, really difficult. I have always been worried about that little Truman, he is just like his dad.) Sorry we could not have told you sooner but we never know what the future may hold.

Sydney has been feisty all day. She is more active than she was yesterday. A funny note about yesterday: Sydney's blood pressure was running low so we decided to get her up and get her a little energized to see if it was because of the way she was sleeping. We decided to walk around the halls one time to get her energy up. Sydney decided to run instead and completed about six laps with me chasing her around with her "noodles" trying to keep up. We finally wrangled her down on the floor to find out her blood pressure was still on the low end. I guess next time we will use a child's blood pressure cuff instead of an adult's. Needless to say the doctor (who, by the way, was watching this fiasco) was not too concerned with her blood pressure.

Well, it was a pretty sleepless night. Lynley and I are both exhausted and Sydney is a bit cranky. Sydney's blood pressure spent most of the night at 100/ 29-35. This is pretty low for Sydney and it had the nurses scrambling for answers. Best guess at this point is that Syd's albumin is running low due to the chemo. We tried everything last night from saline bolus' to poking and prodding her into waking up and crying. Nothing had much of an effect on the blood pressure but it certainly had an effect on us. Boy are we all tired. She occasionally spikes up to 100/45 which is good but it never stays for long. She is getting a blood transfusion as we speak and we are hoping that it bumps her up on a little more consistent basis. If all goes well we should be going home this afternoon. For the time being, though, I am going to sleep. Night Night........zzzzzzzzzzzzzzzz.....

This morning has been bustling with activity. We all slept late as the first night home is a welcomed relief. There is nothing like your own bed. Sydney is doing well today although she has dark circles under her eyes. As has become the tradition, Sydney is extremely active. We are hoping that she will continue to eat and drink more and more but, for now, it is enough to sustain her.

Funny story about eating. I can't believe I am telling this story as I remember the days before having children and thinking that something like this, alone, would be reason enough not to have them. I always thought they were strange little urchins. Well, enough, here is a cute, but strange, Sydney story.

Sydney has always loved playing hide and seek. She would throw a pillow or blanket over her head and assume you could not see the wiggly toes sticking out from the other end. When Papa Kip would come to visit, he would delight in playing with her, however, when it was his turn to hide he was obviously more difficult to find. To compensate for his excellent hiding abilities he would meow like a kitten whenever Sydney would walk by, desperately searching to find him. We would say "I don't know where Papa is but I think I hear a kitty in the closet." She would open the door and low and behold there was Papa. Sydney began to meow like a kitten whenever she would hide. We thought it was so cute and we encouraged the behavior. As time drew on, Sydney would meow more and more often and even got to the point that when we were with the nurses she would act like a sick kitty that they needed to care for. (Not one has a veterinary license, but they seemed to do the job well.) As more time progressed, Sydney's imagination took over and she would spend more and more time pretending to be a kitty. Until last night. And this is where it gets a bit hard to digest. I made the mistake of asking Sydney to come out from hiding to eat a snack with me. And at that moment I did it. I asked if the little kitty would come out to eat with me. She crawled out from behind the rocker and pawed at my leg until I put her raisons on the floor in a bowl for her to eat. At the time I laughed, but unfortunately that was not the end of the behavior. It was the beginning. Sydney demands to eat on the floor "kitty" style. We even showed her how the cats ate their food up on the counter. (We did this to keep the dogs away from their food.) But all of this was to no avail. So, yes, I too have succumbed to having a child with the strangest of behaviors. The only light of the end of the tunnel for me now is the fact that I will be able to share this story with every boy that ever comes near her in her teenage years. I might even call Truman right now. I guess there is always a silver lining. So bear with us at this time of need and when you see us feeding our child on the floor please do not call CPS. We are simply doing the best that we can.

Sydney continues to improve. Her eyes are starting to look less like a raccoon and her appetite seems to be increasing. I am quite glad that I really don't have anything to say today. It is really nice not to be excessively worried for a change.

I really don't know what to say. Sydney is full blast. Most of the issues that we are dealing with on a daily basis are normal two-year-old types of issues. I guess we are very blessed right now. Sure, we have worries and concerns that would seem very unnatural to a parent with a child without cancer but much of that has become our new normal. Sydney appears to look better each day but also has signs of the toll that the chemo is having on her little body. We are loosing more hair and her fingernails are starting to peel. Her appetite seems to be doing well but, as I have said before, during these periods we allow her to "snack on demand" so sometimes it is harder to tell.

I spend much of my extra time, the time when Sydney is asleep, thinking about and researching this disease. I feel like an idiot trying to read some of the materials, but slowly I am starting to grasp Neuroblastoma's complexities. I had to start at the beginning to learn about the sympathetic nervous system in general and then slowly try and grasp the life cycle and stages of the nervous system, including the 100's of different types of cells that comprise it. I really should have paid closer attention in high school. The problem that I have is that the more I learn the more I realize that there is a huge unknown. Not necessarily about neuroblastoma but about the nervous system in general. Like Neuroblastoma we know what happens we just don't know why. The interesting thing is that my research has focused on the this cancer but I have found that many cancers act the same way. They may not be nerve precursor cells but they have DNA changes and cell behaviors that, in some ways, are very similar. Additionally, many of them start at the very early ages of cell life in the precious, yet incredibly complex, stem cells. I really don't know why I am sharing this boring information here. I guess the more I write about it the more I learn. I am hoping I will just have one of those "eureka" moments and it will all come to me. Yes, I know, unrealistic, but I this is something that I can do. This is some way I can feel that I am contributing. Here is what I know (as limited as it may be) Basically, in real terms, stem cells over many stages turn into the adult nerve cells that we have in our body. At some point in this process, from beginning to end there is a DNA change in the cells that tells it to turn into neuroblastoma. These DNA changes also affect the cells ability to replicate itself. In Neuroblastoma this growth goes on unchecked. One of these DNA changes is with the NMYC oncogene. So it seemed like an easy quest to figure out, okay, at what point in the cell cycle does this change occur and why? This is what becomes difficult because the cells are all born from the same mother cells and as they go through the body they take on behaviors and eventually turn into the an adult cell that is relevant to the location that it ends up in. What I am saying that as these cells go through the body traveling to their final destination they actually change and grow based on the areas of the body that they go through. Two cells from the same parent, that appear identical can actually become different types of cells as they go through the body. So, finding a direct path and linkage, and finding out were these changes occur is difficult. Also because neuroblastoma can present in many different areas of the body it might be an indication that a) Neuroblastoma's DNA changes form very early in the cell life cycle or b) Neuroblastoma's changes are created by something that all of these cells are exposed to while going through the body. One of the other interesting concepts about neuroblastoma cells is how they recreate themselves. Based on my research there are many types of neuroblastoma cells and not all of them can reproduce themselves so it might very well be that a therapy dedicated to the reproducing cells may be the ticket. Well enough of "Nerds on parade", I just thought that writing some of my thoughts would help solidify the concepts in my head.

This morning we are off to the clinic. It is kind of an exciting time as Lynley and I have learned to do blood draws from home. Right before we leave for the clinic we will draw Sydney's labs, rush to the Oncology office, hand over our labs, and then commence waiting. We are hoping that this drastically reduces the amount of time that we spend at the clinic. We have been known to wait there for more than three hours just to do a simple blood test. By doing the labs at home it should hopefully cut out a few hours of waiting for them to draw the sample and send it to the lab.

We will be asking the doctors about Sydney's fingernails and toenails. They continue to peel and we are hoping to receive some type of supplement to clear that up or at the very least keeping it from progressing. Other than that we are hoping for good blood results so that we don't have to spend another four hours getting a blood transfusion. Knock on wood. We imagine that her blood counts have continued to drop off and we will be keeping Sydney in social isolation for anther week or so, but you never know. After the last round of chemo she had pretty normal counts at this point. Of course, they were different drugs and we are hoping that her blood drops off more quickly so that it will come up more quickly. Only time will tell. I am off to play doctor.....

Ah ha, we are back! See how beautiful being a blood draw technician can be. Sydney's WBC count is extremely low as we had hoped so we will be social outcasts this weekend. Now, we pray that it rises quickly and that we are not exposed to any bugs.

Sydney is doing well. The Nurse Practitioner didn't have a whole lot to say about Sydney's fingernails and toenails yesterday. She seemed to not be too alarmed by it and gave us the indication that it was pretty much par for the course. I guess we will stick to Flintstones vitamins. Something in the back of my mind tells me that this was a side effect from one or many of the drugs but at this point I just can't remember for sure. Regardless, Sydney seems to be doing well. It is just a careful balance of keeping her happy and occupied without exposing her to any "bugs." These days are frustrating because we can't take her out anywhere but at the same time we want to take her to the zoo and out to the mall and do all of the things that she loves to do.

As far as I am concerned, I am frustrated. I have got to do something but I just don't know what it is. Since Sydney's diagnosis I think I have done a good job being a father and a husband. There aren't any rules or guidelines but I am here, I am caring for them everyday. It just never seems to be enough. I look back over the last couple of months and wonder what more can I do. It seems to me that all I have done is simply exist. As I have discussed before, there is a lesson to learn from every experience I have in life. There is a silver lining to this cloud. I just can't seem to grasp it. I want to make a difference, I just don't know what it is. I can't seem to find a direction. I am not going to go through this without making an impact. I will be part of the solution.

Don't get me wrong, I feel my most important responsibility is that of a loving father and a supporting husband. I feel like I can and have been doing that. But I want to do more. I don't want anyone else to go through this and I have to stop it. My mom always said that I could do anything in life that I wanted to as long as I wanted it bad enough. I believe it and I have never wanted anything more. But, what do I do? How do I do it? I am just going in too many directions. I study, and I study, and I study some more. Hoping beyond hope to find some piece of information that will lead to a cure. I know I am not an analyst, researcher, or doctor but I am capable of grasping the information and making sense of it. Is that my purpose? The frustration here is that I know it is wishful thinking. I know that there are those out there who are more prepared to find the answers. So maybe it isn't my calling. So, if I follow that philosophy, how do I make a difference? Do I help raise funds for neuroblastoma research? Do I increase political awareness? I know all the facts. I know that Neuroblastoma accounts for 7% percent of all childhood cancers, I know that it accounts for over 15% of all the deaths. I also know that it accounts for over 19% of all cancers diagnosed under the age of 5 and that the mortality in that group is much higher. I also know that Neuroblastoma receives less than 1% of cancer funds. So there is a need. Is funding the answer? Is that where I make my impact? Can I help raise enough funds to make a difference? Can I raise enough awareness to make this a political priority? Can I figure out the message and the story that will make this matter to everyone? I simply don't know. Our story is no better or worse than any of the others out there. The kids of neuroblastoma are all normal children. They were all happy and carefree, surrounded by loving families, that because of a nasty cancer have all been thrown into the world in which I live. Some survive and some don't but all of them face this monster. They all have heart wrenching stories. They are all just like you and me. The only difference is the aura of pain, fear, hope and sadness that surrounds them. Children just shouldn't have cancer. They don't deserve it. We, as adults, sometimes do, but not the children. It is this line of thinking that makes me realize that something has to be done. I have to make a difference. This is my purpose in life, I just don't know what my path is.

Part of my problem, or need, was because of a movie that Lynley and I watched last night, "The Life of David Gale." By the way, parents of a child with cancer should definitely not watch movies where people have cancer, die from cancer, and maybe even movies that have any dying whatsoever. I don't know if I necessarily agree with the premise of the movie but it certainly did have an impact. I had an empty feeling in my gut when it was over and Lynley and I just looked at each other in silence. Neither one of us would say anything but we both felt a tremendous sadness after the movie. Not because of the movie itself but because of the fragility of life in general. It just hit too close to home. As I said, it did leave an impact on me, but for, yet, another reason altogether. David Gale was talking about the meaning of his life. His words were that he should leave this world better than he found it. That his life should have some meaning. This is what I think got me thinking in the direction that I am now, more than ever. What am I going to do with my life. Before Sydney's cancer I always thought that the profound difference that I would make would be in my child's life. That would be my legacy. That was how I was going to leave this world better than I found it. But now, that just doesn't seem to be enough.

I guess as I have gone through life I have pretended certain things just did not exist. I knew there was childhood cancer and I knew that some kids died from it. It just never affected me. I never felt it. I know this sounds disgusting, but it was always somebody else's problem. I never gave it much thought and I am trying to figure out why. For me, childhood cancer was like a car accident on the freeway. Everyone slows down to look at the wreck, wonder what happened, and check for any casualties. Once they have passed the scene of the accident people speed up and drive on with there lives. The only recollections that many gain from this experience is how annoyed they were by everyone slowing down. Very rarely, for me at least, do I reflect on the lives of the people in the accident. Usually, I don't put myself in their shoes. Now, what hits me as funny, is that many times I have put myself in others shoes when good things happen. Have you ever thought about what it would be like to win the lottery? I wonder if it is a human protection mechanism that we typically focus and identify with the good and not the bad? I don't know if it is just me who has lived my life this way? I don't know if it is unhealthy to live life from this new perspective? In many ways it sounds depressing. For me at least, it gives me some purpose. I feel better trying to help another rather than just driving by. It isn't because I was any less caring. It isn't because I was not as good of a person. I just never thought of the impact that it had on peoples lives and the children themselves. I never put myself in their shoes and asked myself how I would feel. I just went on and lived my life. It is that type of nonchalant attitude I guess that makes it easier to live one's life. But it just doesn't feel right anymore. There has to be more than just taking up space and sucking up oxygen on this planet. So, I guess, this is a good first step for me. I am now a somewhat caring, feeling human being. Another hidden gift from this nasty disease, I suppose. But what can I do? What is my purpose? Questions I will find the answers to.

Where to begin? Saturday Sydney was rather slow-paced and it was obvious that she didn't feel like herself. At about 6:00PM we began to take her temperature every 30 minutes. At 10:00 PM her temperature hit 101.2 and a call to the doctor on call confirmed our need to head to the emergency room. Sydney has an extremely low white blood cell count so she has little ability to fight infection. For this reason, any type of infection can be potentially life threatening. Upon arriving at the ER we were immediately taken back into a room (One of the benefits of being an oncology patient with neutropenia) We sat back in the ER for roughly 4 hours while we waited for blood tests, hydration, antibiotics and such. At 3:20 AM we were admitted to 3 South where we reside today.

Sunday, Sydney was feeling a little better. We never sparked much of a fever and she was fairly active in our room. Her appetite was till down and she was not drinking much. Most of the day was consumed with IV antibiotics and late in the night we received a platelet transfusion for some sporadic bruising that we had discovered and some bleeding that become evident when we changed her dressing. I say we, but the transfusion was really for Sydney, although with the lack of sleep and stress we probably could have used a boost ourselves. Lynley is also starting to come down with the same symptoms as Sydney. We are guessing that she has some kind of sinus infection. Just for that, Lynley gets to wear a cute little mask with puppies on it.

So that leaves us at this morning. I am particularly worried about a cough that has developed overnight. As of our last blood count Sydney WBC's have gone from .3 to .1. Lynley seems to be feeling better but she still has a pronounced cough. We should be receiving the results of the blood culture sometime this morning and we are praying that it does not show signs of anything serious.

I guess I get to pick what comes first. So here goes. Bad news: we will be here for a while, at least until Sydney's counts start to recover. Good news: Sydney's blood culture came back negative. That is a big relief, although that was what Lynley and I had expected. We just would not have said it without being surrounded by wood (knock on wood). Sydney's cough seems to be better and she has been fairly active this morning. We got the okydoky to actually leave the room and go to the playroom assuming Sydney wears a mask. So, there you have it. Thank you, for the prayers!

Nothing much has changed in Sydney's world. She was very active and playful yesterday afternoon. I think we are all getting a little stir crazy. Sydney has not produced a fever for several days now and appears to be in pretty good shape. I am still waiting on her blood results this morning and I fear little improvement but I am hoping for the best. The good news is that her cultures continue to show no growth. Lynley is anxious to get out of here and back to our "normal" life. For me though, I am quite comfortable here. There are definitely things that I need to be accomplishing out in the real world but I am somewhat comforted by the hospital. I guess you could call it my security blanket. I know that sounds opposite of the way it should be but I like the fact that the answers to my medical questions and quandaries are just seconds away. For the sake of our familial sanity though I hope that there is change in the doctor's opinion and we are sent home.

I apologize for the late update. I have found my purpose and it has had me very busy over the past 24 hours. Sydney is doing very well although her blood counts are slow to recover. We will not be leaving until we see a definite upward trend with her white blood cells. Perhaps tomorrow or the next day. Sydney is a little slow right now, as she needs a blood transfusion. But for the most part she is happy and playful. She is having fun with Mommy and Daddy. Now as far as Lynley and I are concerned we are fairing pretty well too. Lynley is ready to get out of the hospital but is willing to put up with my company as long as I do what she says. Feels just like home to me.

I just think everybody should know that I love my daughter. Even though she can be a stubborn twerp, a rather strange little kitten, and a two year old with all that that encompasses, I really, really love Sydney. I love her more and more everyday and, as bad as our situation may seem at times, I may have never realized the joy and happiness that I have had to date had we never walked down this path.

Sydney's blood counts are on the rise but, perhaps, not quite enough. I believe we will be going home in the next couple of days but understand today is an unlikely possibility. Sydney received a transfusion yesterday and is climbing the walls, literally. I have decided that, much like vincristine, blood must be comprised of pure sugar. I am glad to report that she is giving every indication of being a happy healthier baby girl.

Well, you pay the price for being nosey and reading my diary. I warned you at the beginning of this mess that you may or may not like what I have to say. Today, I have a purpose and I have a goal. I call out to you for help, guidance, and direction. If you read these very words then I ask that you leave a message, email me (mdungan@edocendo.com), or write me a letter, whether you have an answer to my question or not. Many have asked "How can I help?" and now is the time. I am asking for your direction. I will lead, I will follow, or I will get out of the way, but I will find the answers to this horrible disease. I will be a part of the solution. In ten years there will be a parent sitting in my shoes but instead of hearing that their child has a 10% to 30% chance of survival they will here that there is a cure or, at the very least, a high probability of survival. They will hear that their child will live. That is my purpose or at least part of it (there will be more to come in the following days).

This is a question I have asked in many places over the last few days. Yes, we are all afflicted. We are fighting for the lives of our children and loved ones. But what is our message to others. When I scream from the rooftops, what do I yell? What will make the difference in the hearts and minds of the world? I know that it is hard to look at this question from another prospective, but what will make the difference. Why will somebody give funds to support neuroblastoma when they have no connection to it all? Is it because:
    a. it is the most common extra cranial tumor in children?
    b. it is tremendously under funded?
    c. it has exceedingly high mortality rates?
    d. it accounts for 7% of pediatric cancers and over 15% of the deaths?
What are other reasons? What do you think makes an impact? What is the message and why are we important? Why should someone support the effort against neuroblastoma instead of, or in addition to, something else?
Thank you and I look forward to your response.

Good news from the benevolent Dr. Howrey (Dr. Handsome). We will be receiving a platelet transfusion and then going home (about 4 hours is my best guess).

After thanking all of our nurses and saying goodbye we finally arrived at home about 4:00PM yesterday afternoon. Sydney was so incredibly excited she just could not stand it. She was like a kid in a candy store. She couldn't focus on any one thing at a time and was constantly moving from one toy and one room to another. It seemed to me almost like Christmas morning she was so incredibly happy.

And then it happened. At about 5:30 I received a desperate phone call from Chance. His second son, Preston, had taken a high dive off the couch and cracked his skull on the tile floor. His wife had rushed out the door to the ER and he was waiting with his other son, Truman (one of Sydney's current love interests) until a grandparent could get there to watch him. He asked if I could run down to the ER and be with his wife and Preston (our Godson) until he could get there. He thought I was still at the hospital but, no matter, I gave Sydney and Lynley a kiss and hopped into the car and rushed back to my home away from home. Upon arrival, I found them in the triage area. Preston was responsive, alert, and thankfully the only thing wrong appeared to be a goose egg on his forehead that was actually the size of an ostrich egg. When Chance had arrived about 30 minutes later we were, once again, sitting in the waiting room. He asked me if I had any pull to get them in any quicker. I had to explain to him that our medical insurance did not have a frequent flyer program so it would be unlikely that we could get them an upgrade. We sat in the ER for several hours and waited with them. The usual group of friends slowly showed up and once again this group sat in the ER of Cooks Medical Center for another night of waiting and hoping for the best. There were laughs, worries, and I think many of the children there are still scarred for life by the rendition of the hokey pokey that I did for Preston. It was kind of eerie because this is the same group of people that was there with Lynley, Sydney, and I when Sydney was diagnosed. The conversations were lighthearted and a bad situation was made much more comforting. I am lucky to say I have about the best group of friends you could possibly have. As we left it late last night, Preston was okay but they were going to do a skull x-ray just to make sure everything was alright. It is so nice to go to the hospital and come home with good news.

I also want to thank you for all of the responses that I received yesterday. I am learning a lot and your input has been incredibly valuable. I never realized the size of the army we had behind Sydney and the extent of support that we have. I look forward to more and more responses today. I will be sharing many of the wonderful things that I have learned over the coming days. It is more important that you keep responding. This is the first step. It will make a difference. Within two weeks we are going to change the world of neuroblastoma, forever.... I have a purpose.

SYDNEY IS SUPER, GREAT, PLUGGING ALONG. I CAN NOT TELL THAT SHE IS A SICK LITTLE GIRL.

I am happy to announce that little Preston's head appears to be just as hard as his older brother's. The x-rays came back negative. Other than waking up a couple of times through the night he is back to himself, with the addition of a new lump. Like I said, it sure is good to come home from the hospital with good news. Sydney is quite happy that Preston is okay and in her words "Preston owee, kiss, all better."

Some days I feel like I must be living in complete denial. Sydney is, at many times during the day, so full life and joy and happiness that it is inconceivable that anything could possibly be wrong with her. Much of this is my perspective because I see her day in and day out. I can only realize the physical changes when I step back and look at pictures of healthier days gone by. If you asked me "How is Sydney?", I would say "Super, great, plugging along, I can't tell that she is a sick little girl." But inside I am slowly starting to realize the changes in her appearance. My daughter has cancer and I can now see the effects. She has lost most of her eyebrows and there are clearly gaps missing in her eyelashes (this is a new occurrence after the last round of chemo and what I think brought my attention to the changes in her appearance). It is truly amazing the difference eye brows and lashes make on the look of one's face. The healthier days between chemo are fewer and far between. She spends much more time in her "pale" state which has finally become much more of the norm that her little rosy cheeks. Her hair on her little head has slowly thinned to the point that it is probably time to have the comb over removed. Most of the time her eyes have dark circles around them and much more of the time they appear to have sunken in. She has grown taller over the last few months yet her weight has been unchanged. It is obvious now that the drugs are starting to take there toll. I don't say this to depress but rather to remind myself of what is going on in her little body and to remain focused on the bigger picture.

I don't feel sad and I am certainly not depressed and this is why I describe her to my diary. With all of these little physical changes, I still see her as unchanged. Hmmmm??? You ask? But yes, who Sydney is is not what we see on the outside. We see it in her eyes. The drugs can't take it away. That little sparkle. That look of unbelievable joy and love. It is a twinkle of happiness and it is there everyday. It has not diminished. It has not changed. It is the sign of a healthy, happy, and truly loved little girl. No fear. No inner turmoil. Pure, untainted joy. I don't have that look anymore. I am too cynical and I have been too spoiled by age and the realities of life. But in Sydney it still exists. That sparkle in her eye that tells everyone that all is good in the world. She gives that back to me in strength and hope and love. In many ways, I am also regaining my innocence. I am regaining that feeling of pure joy and it is all due to my precious gift. So when you see me with my daughter and you ask me how she is doing and I tell you "Super, great, plugging along, I can't tell that she is a sick little girl.", perhaps now, you will understand. I guess, once again, it is all perspective.

I continue to receive many emails everyday. I am learning to scream louder with a softer voice. Your input is incredibly valuable. Please continue to write me. Through you, I will figure this out. I have a purpose.

I guess this is partly a Sydney story and partly about me. Last night I sat in a rocking chair with a roll of scotch tape for just over and hour and a half. In the playroom, Sydney has a box that is approximately 2' x 2' x 3'. It is the box that we keep her "happies" in. Sydney's "happies" are small wrapped presents that we give her after she has a shot or some type of medical procedure. They are all small presents. Sometimes a coloring book, sometimes a bottle of bubbles, but mostly just a mish mash of inexpensive toys that we give her to comfort her after a traumatic event. This was actually suggested in many of the books on coping with a child with cancer. Anyway, the box had been emptied and I sat there in my rocking chair and Sydney laid on the floor with her head in the box. About every minute or so she would climb out of the box and say "More tape pease, Daddy." (Pease is Please in Sydneyan) I would slowly take off a two inch piece of tape and hand it to her. She would grab the tape with her left hand and shoot up her right hand with her palm facing me. At which point she would say "Nuff Daddy Nuff, tank you." (In Sydneyan she was telling me that I gave her enough tape, she did not need anymore, and thank you.) She would then get on the floor and wiggle her little body so that her head was once again stuffed in the box. A minute later this process would start all over again. I don't know whether you have to be a parent, a grandparent, or just love children to get the full impact of that moment that I spent with my daughter yesterday afternoon. For me, it was, perhaps, one of the most significant memories of my life time. It was silly, happy, peaceful, cute, funny, innocent, pure and all that is good in life. I took much of that time to reflect on my happiness and our journey. These thoughts lead to the journeys of others and the disbelief that I had ever felt any pain from her condition. It was a moment in time that I felt pure joy and I was not haunted by the beast. It was the first time in as long as I could remember. I tried to think about it. I just couldn't. I thought about the other families that I knew were having tough times in their fight against neuroblastoma at this moment. But all I could think of was just spreading some of my joy to them. I was incapable of thinking of anything else. That time, that hour and a half yesterday afternoon, there was just too much joy and peace. I could not fit even a minuscule amount of pain or fear in my heart. I don't know what caused it and I don't know if it will ever come back again but I hope it does. This road I travel on is very strange. At one moment I feel absolute terror and then the very next absolute peace. It is both great and horrible, peaceful and terrifying, good and bad, and incredibly unique. I am continuing to learn about and feel emotions on an entirely new level. It pains me to think that I have gone through a third of my life only experiencing a third of my emotions. Whether it was because of a protection mechanism that regulated my feelings, or because I was too macho, or believed I was too much in control. I wish I had fully experienced my past. Ironically, I feel more in control of my emotions than at anytime in history. I don't know what it is but it begs some interesting questions. Is it being a parent that gives you the capacity to feel at that level? Is it that your child has cancer? Why have I changed and what does it mean? I still wish from the bottom of my heart and soul that this never happened but as always there seems to be a silver lining to this black cloud. It certainly isn't enough to make this journey worthwhile but at least it is some good. I will find more. I have a purpose.

PS. After I had finished my time with Sydney yesterday afternoon I took the opportunity to look in the box. I am sad to say that my daughter has little decorating sense and scotch tape is not an adequate decorating item. I wonder what she was thinking.

On another note, I want to thank you for the responses yesterday. They are incredibly helpful. It is very interesting to see what you think. Keep writing.

It is another action packed day. We are off to the clinic at 8:30 for a check up and to get her blood results. Once again Nurse Lynley and I will be drawing the blood from home to speed up the process. We hope Sydney's counts are on the rise, it would be a good sign for us to be able to go back into the hospital on Thursday for the next round of chemotherapy. If you are playing along at home, the over/under on Sydney's Hemoglobin is 8.2. Wish us luck.

Sydney really did well this weekend. We spent much of the time at home but we did take the occasional jaunt outside. We even made a trip down to the pond to feed the ducks, one of Sydney's favorite activities. Unfortunately, the ducks and squirrels were unimpressed with our food offerings but two of whom made an effort to follow Sydney along the winding pathway. It was strange that they would not eat but that they continue to swim along the bank to follow Sydney. Anyway, her color is starting to return and physically she seems to be improving. Her nose runs constantly which we have heard is common with kids that are on her protocol. I never thought I would turn into my mother, especially me ( I was hoping to turn into my dad, no offense mom, he is male), but I am constantly chasing her around trying to wipe her nose. When I say constantly I mean: drip.....drip...drip.....drip....etc. It is constant and continuous. My daughter is the never-ending wellspring of snot. I still love her. I will be in touch later.

I am starting to realize why they actually take blood tests. Even with our extensive experience and dedication to Sydney's blood cells we are unable to accurately predict her counts. In fact we are not even close. For those of you that guessed Sydney's hemoglobin, it was a whopping 10.2. I guess we will just have to stick with the old method of taking blood draws until our telepathy improves.

It looks like we will be reentering the hospital on Thursday. We will have a 12 hour creatinine clearance which unfortunately means the placement of a Foley catheter. OUCH!!! But on Friday we should be starting our fifth round of chemo and our last prior to surgery.

I am still trying to do my best to respond to all of the email that you have been nice enough to send me. I continue to look for more. When I get a chance a will let you know what I found out. So far, it has been quite interesting. With this information we will make a difference. I have a purpose.

Sydney continues to improve. These times, the days right before we shock her system one more time, are perhaps the most bittersweet. Everyday she gets more opinionated and more active. These are the days that we relearn what it is truly like to have a two year old running about the house. It is a shock to our system every time. You would think that we would learn by now. I sometimes wonder if it is harder raising a sick child or a healthy one. I am right in the middle of it and I wonder how parents ever survive two solid years of toddlerhood. I have written many times in my diary that, despite all of the fear in the beginning, life slowly becomes a new version of "normal." I think I once used the analogy of how one's perspective changes over the time that a parent anticipates changing his/her first diaper until they have changed their last. In the beginning many assume it is the most disgusting thing you could possibly do and then very quickly it becomes second nature and never requires another thought. Much of what we go through with Sydney is the same. At first, it seemed unfathomable but, day by day, it became easier and easier to care for her many medical needs. And then once we adjusted to the life of caring for a sick, somewhat subdued child, the two year old makes her glorious appearance. We start running and running and running. It is both refreshing and exhausting. I guess once again it is perspective but another lesson I am learning is that "normal" two year olds are strange little heathens and I am amazed that any parent ever survives. Boy, I love her.

Over the past few days I have received literally hundreds of emails answering my question: Why fund neuroblastoma research? I not only posted the question here but I also asked this very same question on the Neuroblastoma newsgroup and several other places. It has been a fairly time consuming undertaking but one I have enjoyed tremendously. I still continue to do so. I have learned from others in whose footsteps I stand. I have learned from parents walking a parallel road in their quest to find their own answers and, of course, I have heard from family, friends, and many that I never knew before this experience.

I don't know exactly what I expected to see and hear before I asked the question but I can say it would have been far less than I received. I don't mean in volume of email but in quality of sentiment. Several told me of their journeys. For some it was their own journey with cancer, for some it was a journey that they had with their child, and for many it was a journey that ended in tragedy. All of whom had their own messages and perspectives. I talked to fund raisers and political figures, florists and construction workers, adults and children. It has been truly a diverse group of visions and opinion. I will discuss many of the stories and lessons over the days but one of the most common reasons that people found to give to a charity was based on a personal connection. I have found this to be true in my own life as well. But much of the reason that we give, that we make a difference, is because of the feelings and emotions we associate with a particular cause. Many of the writers felt touched by our story and that was their reason. Some even thought that this "Dad's Diary" would play out well in book form. In fact, I had some offers of help. I find the idea strange and the only vision I have concerning that idea is my sophomore English teacher turning over in her grave. In fact, I think she might have said that she would if anybody could ever understand a word that I had written. She, obviously, did not have the appreciation, the admiration, for commas, that I do. But, that really is not the point. The point is that people become motivated to take action because they become aware. I know that has been true for me. I can't speculate as to what I would do if I weren't in the position that I am today. I don't remember what life was like before this and I don't recall how I thought. I now know to much and I can't turn back. For me, I was educated. I learned about pain and joy and to feel my emotions. I have now walked on the other side and I feel. That is why I am so motivated to do something. It wasn't that I didn't care. It was that I didn't know. I never felt it. I guess it is all part of growing up. Maybe I was naive? But at some point in life everyone hits a bump or has an experience that changes their life and their direction and it becomes real. To make a difference in the world of Neuroblastoma I will have to make it real. I have a purpose.

Last night, Sydney was feeling well enough, and we were feeling brave enough, that we actually went out for our second dinner out on the town since Sydney's diagnosis. It was absolutely exhilarating. I had forgotten how nice it was to go out to dinner with family and friends. There were some small problems, however. We invited Truman, Preston and their family along. Lynley and I figured it would be quite a while, most likely months, before we would be able to do it again. So, I succumbed to thought of having Sydney spending supervised time with the disease-ridden, hormone over-producing, little scoundrels. After a thorough medical examination and health questionnaire, I was prepared for an evening out with little Truman and his 1 year old little brother. Now, there was way to much hand holding and hugging and all of the things that a father would disapprove of, but Sydney was happier than I have seen her in as far back as I can remember. We went to Joe T's, which is a large Mexican restaurant with an outside dining area which must cover the length and width of a football field. It is covered in flowers and trees and fountains can be found every twenty feet our so. There are nature paths around the many garden patios and even a pool in the middle of one. Sydney and Truman, who is five, held hands as they frolicked through the garden and I could tell by the look in her eye that these moments were some of her happiest as well. I guess their is a point in every father's life when you have to let your daughter love another man. It was funny and great and happy. I have decided that I will let Truman date my daughter, of course, they won't be able to go without me until Sydney is thirty. I guess I will have to work on my frolicking. We have one more day before we go back into the hospital. Lets hope it is a good one.

I have received so many great emails over the last few days. There were a couple that stood out, that addressed the bigger picture, and today I am focusing on them. I think I will use their words as they were better than any that I could conjure. I share them with you because I think they have an important message for parents, family, and friends and it is certainly a concept that I want Sydney to understand.

"The pebble you throw into the waters of eternity have a way of causing ripples far beyond your lifetime, so you may never fully appreciate the effects of your efforts. Someday, some child whose life was lengthened by newfound treatment may well do something that will forever change history."

"The fact that one has been blessed with healthy children and never had to face the painful growth you have....THAT is a reason to fund research. As acknowledgment of the blessings we have received and as a show of compassion for those who had to walk that long, dark, and lonely road.....THAT is a reason to fund research. Because one HAS walked that road and has a child who survived............or has buried their child, the heart of their very heart..........THAT is a reason to fund research. Because we are all God's children and we are to love one another. Because, whether we knew you before or not, we are united in suffering........THAT is a reason to fund research."

"My first response to your question was "there but for the grace of God, go I." You fund research because the next child to receive this diagnosis might be yours, or your grandchild and then it's too late for you to throw your own money at it and you'll be praying that someone else funded research in the past."

Names withheld due to the fact that I did not ask for their permission and I viciously stole their words and reproduced them here.

I have been inspired by your many letters. I will make a difference. On October 1st I will make a stand. I have a purpose.

Yesterday was a great day. As expected right before we enter the next round of chemo Sydney is doing wonderfully. It truly feels like a boxing match. We send her in to fight and fight only to let her regain her strength and go back and do it all over again in the next round. I guess the bell has rung. Sydney was very active all day and our neighbors were nice enough to craft a wonderful homemade dinner for us. We ate and ate and ate. Sydney loved it too and I think she ate more than I have ever seen. I don't know what the equivalent to catnip is in toddlers but whatever it is it was certainly present in the mashed potatoes. Sydney ate more potatoes than Jay, Lynley or I together. I will have to get the recipe to figure it out. We may have just discovered the next new wonder drug. It will be interesting to see if she loves them as much once the effects of the chemo sets in.

We will be going back to the clinic at 8:00 AM this morning. After a few quick tests we should be admitted. She will spend much of the day with a Foley catheter in place to gather a 12 hour urine sample. If all goes well we will be starting Cisplatin and Etoposide in the middle of the night. I hate those drugs. I will be in touch as I have time.

Well there was a slight change of plans which, in all honesty, was probably for the best. Due to the popularity of the third floor oncology department our reservation was overbooked at the luxurious Cook Children's Medical Center Resort and Day Spa. It wasn't until 9:00 PM that the festivities truly began. It was nice in the since that Sydney had several hours to play before beginning another stay at the hospital. Sydney is doing pretty well considering she was woken at 11:00 PM for the placement of a Foley catheter. She has slept pretty peacefully. It will be removed at 11:00 AM and then the fun should begin. Please keep her in your prayers.

For me, yesterday, was a mixed bag of nuts. I think it is related to the drugs that Sydney will be taking but I certainly had an uneasy feeling. Most days it is manageable and I don't actually physically feel the effects of the fear and anxiety, but yesterday was an exception. It is really strange. I can be going through my life, happy to be with Sydney and Lynley, caught up in the moment, and enraptured with a sense of peace -- and then it hits. My heart starts to race. I start to feel every breath and my body seems to tingle. It is almost like an allergic reaction. In many ways it is. My body and subconscious mind are rejecting my reality. It just hits, fear and impending doom. I feel scared and out of control. It takes a steady breath and the thought that Sydney is still here to regain my composure and bring my mind and body back to peace. Sometimes I can just look in her eyes and in Sydney's words daddy becomes "All better." This reality, our life with Sydney, that has seemed to become so normal on the outside, rears its ugly head and shocks my body into acceptance. Like I said, it doesn't happen all the time. I don't know that a parent would survive if it did. But it is evil and I don't like it. I hope today is better. It must be. I have a purpose.

Sydney has finished day 1 (of 4) of her fifth round of chemo. There were some minor hiccups but, for the most part, she went through with flying colors. We received some frightening news just before we started the etoposide. The 12 hour urine test came back from the lab showing that her creatinine level was far to low. This can be a very serious condition. Doctors were called and the lab results were rechecked. Luckily the sample was computed over a 24 hour time period instead of 12 hour period and once recalculated Sydney was considered perfectly normal. There were a few tense moments trying to figure out what was going on but, in the end, it really was a small bump in the road.

A funny thing about Sydney: on these particular drugs she puffs up like a balloon. Her face gets extremely swollen and she looks a little like the girl that turns into a blueberry in Willy Wonka's Chocolate Factory (minus the color, okay whiteberry). It is always a little worrisome but it has become a fairly routine condition. However, what seems to make it funny is the times, like today, when she adds the finishing touch by playing "Karaoke Elmo." Sydney has a toy that lets her sing along with Elmo through a plastic microphone. So, this afternoon Sydney sat in her bed, carefully holding her microphone to her mouth, bloated full of chemo, singing nursery rhymes with Elmo to the delight of her parents, nurses and anyone walking up and down the halls of 3 South. She only understands about half of the words but she sings the entire song anyway. Her mannerisms and gestures are the best part of the entire show. She has got it down pat. She will provide the correct gestures (hand movements that make sense with the song) but totally miss the words. I really don't mean to brag, really! At this point she more closely resembles a bad Las Vegas lounge singer than a true diva. Regardless, she has a wonderful time and, for me, everything is right in the world. They say laughter cures all and I am tempted to believe it. That baby girl is truly my strength.

On another note, thank you for the continued responses. I actually received a thoughtfully composed answer from Sydney's pediatrician. Now, if I could get three or four more pediatricians to agree I could have a national slogan for neuroblastoma research -- 4 out of 5 pediatricians agree, neuroblastoma research is important. No?? I think that slogan might have already been taken. I think I will stick to what I know best. I have a purpose.

I have spent the last few weeks consumed with the thought of doing something. I have a need to create change. It is something that I can do, something that I can control, and it makes me feel like I am doing my part. I haven't spoke of this much but it is something I have wanted to get off my chest. I am starting to realize that the movie I spoke of last week, "The life of David Gale" has had more of a profound effect on me than I had let on. I think I identified with it so much because of David's love for his son. Before the madness and the actual story plot really got going there were several scenes with he and his son. There was such love in his eyes. The moments that he spent with his son, for some reason, were just incredibly powerful for me. So much, that the rest of the movie was not about the death sentence but, for me, about the love of his son. Yes, I know, I missed part of the point, but in the state that I am in, that was the connection I made to the movie. I identified with his love and absolute joy with his child. It was very personal and I felt like it was me. The moments spent were silly and unaffected by anything in the outside world. It touched my soul. Even in the process of making his life have meaning, for me, it was about his son and his legacy. I can't say it any other way, I was touched. I don't know if other people are touched by movies in that way but it was one of those "life moments" for me. It was what got me thinking in all kinds of directions. First, I thought immediately that I have to make that impact in my life. Then, I began to justify it in my mind. I came up with all kinds of reasons why I needed to make a difference. I came up with the "equality principle" which states: For my life to have true meaning, for me live the rest of my days thinking that I had met my match and made the necessary impact and left the world better than I entered it, I would have to do enough good to make up for the bad that I or my loved ones had experienced. I know it sounds wacky, but hold on. I need to meet all bad with equal and opposite force to go through life even. I took Sydney's cancer as the first battle. If I am to make sense of Sydney's cancer? If I am to meet it and to rise to the challenge of giving my life meaning? I must produce enough good to overcome the bad of Sydney's cancer. The actions that I take must be more devastatingly good to the world, to the families, to the heartstrings of anyone that has read our story than the devastatingly bad that has occurred to my daughter. I know it is not rooted in complete sense and in some ways it is if the old Mark has returned. But that, my friends, is the way I have coped. Healthy -- NO. I could very easily set myself up for devastation. This is where the other Mark comes in and rationalizes the situation. If I do something with noble intentions that produces a modicum of good then I have started my job, even if it falls well below my expectations. I have begun to move in the correct direction and I am on my way to meeting my goal. There you have it folks, the thoughts and ramblings of a dad who is still trying to make sense of this ordeal. I will continue to try, to love my daughter and my wife, and bring the world back in balance. I have a purpose.

Sydney has finished day 2 (of 4) of round five of chemo. Last night she was still incredibly active and fun to be around. Minus a couple of two year old outbursts. Yes, she continues to have her own opinions and is not afraid to express them. She slept comfortably throughout most of the night but has woken this morning with pain in her abdomen. "Mama, Daddy, belly hurt." She is now sleeping uncomfortably. We are concerned and trying to figure out the source and make her comfortable. I will let you know as we find out more.

Sydney has received another dose of Zofran (anti nausea). I have interrogated her thoroughly and she is no longer in pain and would appreciate it if I would not bug her about it anymore. Of course, as she said, "Daddy, go away, Sydney fine." Little twerp!!

Sydney is continuing to tolerate this round of chemo very well. One more day of Cisplatin and we should be going home tomorrow morning. Her appetite and intake of fluids has decreased but at this point I think it is because her appetite is being artificially suppressed by all of the IV fluids. The anti nausea medication continues to work and although she is a little less active she is in good spirits. We spent most of the day yesterday hiding under the pillows on the makeshift bed/couch that Lynley sleeps on each night. We hid from Mommy. We hid from the nurses. We hid from her stuffed animals. We hid from her shoes. We hid from just about every inanimate object in our hospital room here on three south. I am guessing that I spent a good four hours yesterday hiding from everything she could imagine. Unfortunately, I also hid from the Dallas Cowboys football game, but I suppose that was okay as I am yet to see one this year. I assure you that hiding from the world is a much better alternative than watching the torturous, continuous loop of Bambi that usually plays on our television. I had a great day with my little angel. I enjoyed hiding from the world because it gave me time to sit with my daughter and reflect over the past three months of our lives.

I guess it really depends on my mood or, perhaps, which Mark is out at a particular moment but it was really nice to have the time to reflect. I am very lucky to be blessed with Sydney. As hard and ugly of a road this has been at times I am continually amazed by the sparks of goodness that have come flying out of our experience. It was just a little over three short months ago that our lives changed forever. As I reread my diary and digest my words for perhaps the hundredth time I am amazed by where I have come from. I know this story is truly about Sydney but I think she should know what she has done for her father.

As I sit next to you early this morning and watch you sleep, I realize that you don't know what an effect you have had on your Daddy and the hundreds of others that follow you and pray for you everyday. As you go through your life much of this will be forgotten. You will experience much happiness and sadness, much joy and pain, and many struggles that others may never endure. Perhaps, at some point, you will wonder: Why me? Perhaps you will be looking for meaning in your life and someday you will be looking to find out what your life really means. Well, when you are searching for answers let me remind you that you have accomplished in just two short years far more than many have in a life time.

Before you were born I always wanted to be a good daddy. I was consumed with work and playing golf and living my life. I was motivated by my own wants and needs. I was a fair husband to your mother and an acceptable friend to many. My priorities were my own and my needs were supreme. Then, you came along. My world was flipped around. I know longer craved the newest car or house. I no longer cared if I made the next golf round. I was happy to be with you and your mommy as we enjoyed our isolated lives together. I became aware of those around me and I was no longer one but a family. My goals changed. I was still tucked inside my own self- centered world but now, at least, my world was expanding. I have always loved and respected your Mommy but it was you who taught me how wonderful of a women she was. I hope as you go through life you acquire many of her qualities, many of which I was never prepared to bestow upon you. I learned to appreciate your Mommy and everyday I valued her a little more. We were always good friends but through these times we became much more. I still had a lot to learn.

When you were diagnosed at the end of June in 2003, it felt like my world was falling apart but it was the experience that changed my life forever. I knew that I had to find strength for you and your Mommy and I did. I found it through you. In those early days I learned many lessons, many of which you will find in this diary. I learned to feel both happiness and sadness, feelings that I always thought that I had understood but had never been defined until that moment. Through your struggles, I learned to appreciate those outside of our family. I had never known the true values of friendship and compassion. It was your life and your journey that finally shocked me into understanding. Today, I am a better friend, a better shoulder to cry on, and a better human being. I also learned very early on that my life no longer revolved around me. Now that I had the capacity to identify with others, I finally understood that there was more to life than my own little world. I also learned courage from you. No matter what was happening to you at any given moment your were complacent knowing that you were loved. I felt the same way and by watching you I knew I could get through anything with the love and support of others. I am sad to say, but I never knew that. Sydney, you have inspired me and my life now has purpose and meaning. As we have walked down this road together you have inspired 100's of families and I am sure that you will inspire many more. I have received many letters, notes and emails telling me what a profound effect you have had on thousands of lives and one day I will share them with you. Over the next two weeks the world will begin to change and it is all because of you. You don't know this yet, but you will save thousands of lives. It is you that have given me love, strength, courage and compassion, and it is you who have given me a purpose. I have much more to share with you and in the coming days I will. I just wanted you to know how much I love you and I want to thank you for giving my life meaning.

I will love you forever, I will love you for always, my baby girl you will always be.

There was less singing today and the pillows stayed in their place on the couch. Sydney struggled with nausea early in the morning and her activity level was obviously affected. She was irritable as well, but then again, that is to be expected. She tolerates the chemo and life in the hospital much better than I would. There were flashes of activity and even a couple of jaunts through the corridors of 3 south but she would tire easily and Lynley and I would almost always end up carrying her back to the room. It was the first time, since the beginning of this mess, during the first round, that we have truly seen the chemo take an effect. We have been very blessed thus far and have come to expect a smooth hospital stay even at such a medically demanding time. I guess that is just another part of the roller coaster ride. I spoke a few weeks ago about the chemo starting to take its toll and I guess this is just another part of our journey. Sydney still knows that she is loved and is always content to be by our side. It isn't that Sydney is not doing well it is just a shock to the system. I would think by this time I would be better prepared. It just pains me to see her sick. I am happy though. A hug still seems to make it "all better."

At about 5:00PM last night the last drop of chemo hit her system and I am glad to see this round come and go. I will not have to see a single cc of Cisplatin hit her system. Late in the day, the benevolent Dr. Eames made an appearance. It had been a while since we had seen her as she had been on a much needed vacation. It was wonderful to talk to her. She is my rock. She keeps me fair and balanced. She never offers a single guarantee (I don't think there are any in Neuroblastoma) but somehow I always feel confident and reassured after she leaves. We talked about the upcoming surgery and are starting to schedule all of the events. It looks like we will be spending Halloween in the hospital. I guess I will have to put a note on the door of the house to let all the kids know where to come. Sydney really delights in being the giver of candy rather than the receiver.

Yesterday, was yet another learning experience for me. As I sat beside Sydney, I corresponded with many parents whose children have been struck by this disease. I talked to a mother in Atlanta whose child will be going to San Francisco for a surgery about the same time as Sydney. I talked to yet another mother from the Northeast who was going through the first round of Monoclonal Antibodies and caring for her son in the hospital. There were perhaps twenty parents in all. All of which had different backgrounds and stories. All of which were struggling in the battle against neuroblastoma. I learned more than ever that we are not alone. There are hundreds of heart wrenching stories out there in this world. There are parents, right now, sitting in my shoes on a computer out there in Neverland trying to make sense of this whole ordeal and too many children who are fighting a battle they never should have been in. It is amazing to see the similarities in our journeys. I am touched by their stories and moved by their words and perhaps that is another gift from Sydney. I can tell you this, something needs to be done. The suffering is simply too much. These kids need an answer and I have a purpose.

We were discharged from the lovely Cook Children's Medical Center and Day Spa. As always, it was a delightful stay but we are glad to be home. Sydney is still a little on the puny side but she is very happy to be home.

It is October 1, 2003, a day that will live in the hearts and the memories of Sydney, Lynley and me for the rest of our lives. Today is the day that will mark a significant change in the world of neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the world. This will only work once and this is my best hope at making a truly significant impact while I still have the opportunity to do so.

Today I officially launch the "Lunch for Life" campaign, an ambitious fundraising effort to raise ten million dollars in just ten short days. I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for Sydney, for Lynley and me, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's. Do it for any of the reasons that we have discussed over the past few weeks. Do it as a "snooping" tax for reading my diary. Do it so that they can afford to buy a book to improve my grammar. Whatever the reason you choose, please do it, and do it now. Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. Or better yet think of it as paying five dollars to be a part of changing history. It is a small price to pay and we will save lives, precious children's lives. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in. I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked of you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. This could be the single effort that does it, that produces the cure. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days. Your donations will go to research to cure neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of neuroblastoma. It is a tax deductible contribution to you. You can give directly to the CNCF here (http://www.cncf-childcancer.org), it is a secure web site and a preferred method to make your donation.

You can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108

if they are busy you can make the donation to my office at this number. 1-877-795-7948

if you want to call me personally you can make your donation through me. 1-817-846-6085

Whatever method you choose your donations will be going to benefit the Children's Neuroblastoma Cancer Foundation and they will make a difference in children's lives. In the not to distant future it will be your gift that allows a doctor to sit down with a family and say "Your child has neuroblastoma, but it is okay, there is a cure." We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference. You hold the future in your hands, please make it a good one. I will be posting our fundraising results on this website on a daily basis. You will know how much of a difference your participation has made. Each day the next level of friends should be taking the necessary steps to make the difference but it is up to us, right now, to get the ball rolling and ensure that it works. You are my five friends. Let's take a stand together. From the bottom of my heart, I thank you. I thank you for your prayers and well wishes and I thank you for helping me change the world. It is my daughter who has given me the strength and courage but it is your kind words that have inspired me. We all have had a lot to learn from one precious little girl. I thank you all for my purpose. We will make a difference.

Yesterday was exhilarating. I received hundreds of messages and my inbox continues to stay full. I am completely amazed by the wealth of kind words and well wishes that people have sent to Sydney, our family, and the many families stricken by this horrible disease. One of the interesting things that has come out of this new found mission in life is overwhelming support, not only from Sydney's family and friends but from many around the world. Several of the families who have fought and continue to fight their own battles with neuroblastoma have joined us in arms in an effort to get the word out and make a difference. We even have a family from Australia who has offered their help. Someday I will have to explain to Sydney how ironic that is. We have heard from people all over the United States and the donations continue to roll in. It is truly an exciting time in our lives. Thank you for all of your support. I ask that today that you follow up with your five best hopes. Inspire them to contact their five friends and make a difference in the lives of all of these children and all of the ones that will follow. We have completed day 1 and now it will be our friends who carry out our challenge. We will save lives and bring many smiles to the faces of thousands of these children. Thank you for all of your support.

Yesterday, the CNCF received a little over $4,500.00 in donations. Of course, this does not include those who decided to mail their donations in. I couldn't be happier. That is an incredible amount for just the first day. I hope beyond all words that today the donations continue to roll in. I am in disbelief that there were so many people that decided to help on the first day. I never realized how many read my diary. I guess I will have to start watching what I say.

Sydney is improving but she still spent much of her day lying with me on the couch. I don't really know if Sydney realizes what is happening with "Lunch for Life" or if she just thinks I am really busy at work. As I sat with her on the couch yesterday we kept hearing a sound from the other side of the room. My email application on my computer makes a dinging sound whenever a new email arrives. Each time a new email would hit my inbox and Sydney would hear the sound she would look up at me and say "Happy faces." She must have done it over fifty times yesterday afternoon. Sometimes she would crawl off the couch and go over to look at my computer that sits on our coffee table. She loves the noise because she thinks that somebody is sending her happy faces. One of the things that Lynley and I do on the computer is use the little icons in our instant messenger to make happy faces for Sydney. Whenever a new instant message arrives it makes the same sound so Sydney always assumes that daddy is getting happy faces. It is one of her favorite past times and she loves to sit at my computer and watch the little faces appear. People at work even start their messages to me with happy faces in the hopes that Sydney will be peering over my shoulder. When she grows up I wonder what she will tell everybody that her Daddy does?

This morning we will be going back to the clinic. I believe it is time for a blood transfusion for Sydney. We are getting better at being able to spot the signs but I am not going to step out and guess what her blood work will be. We know how poorly we did at guessing last time.

Once again we have been fooled by the effects of Cisplatin and I have proved to be completely incompetent at predicting Sydney's blood counts. For the second time in a row Sydney's blood counts have continued to increase immediately following her round of Etoposide/Cisplatin. This is both good and bad news, really. It is nice that she is tolerating the drugs well but, more than likely, it means that it will take her bone marrow a longer time to recover. Our oncologists continue to be very pleased with Sydney's progress.

Sydney sent us for a little shock yesterday and we are still a bit worried. One of the many side affects from Cisplatin is hearing loss. Yesterday afternoon Sydney became much harder to understand. Both Lynley and I were quite shocked at our inability to translate her words. It is something we have been prepared for but when you see these little things happen it still takes you for a loop. We are hoping her tongue was tired or perhaps she was a bit sleepy, but only time will tell. I still maintain that I will be able to shout "I love you" loud enough to be heard. It is just something that pains me to see my daughter endure. It may seem kind of sad and it may seem like it could be hard for a parent to accept but I would gladly trade some hearing loss for the privilege of sharing her life. Another perfect example of why I must do something. Another reason we must find a cure. And another reason that I have found my purpose.

Day 2 of Lunch For Life has been incredible. I am now hearing stories from across the globe. Many parents who walk the road with us in parallel lives are joining the cause. We are on the radio. We are in the newspapers and people are starting to take notice. I must admit as I thought through this plan in the days of late September I wondered, "With all of the wonderful insights that I have gained from my daughter and this experience, was it my newly regained senses of innocence and naivety that were leading the way?" As I looked at the world from my daughters eyes all I could see was love and hope, kindness and joy. Would other people see this as well? Would her message be clear and would people understand? Have their eyes been opened by this sweet little girl or have the remained closed? Will they fall victim to apathy and indifference? Before this nightmare would I have stood up or would I have continued to let these lives fade away? Would I have made a difference? Would I have taken a stand? For now, I am content to look at the world through Sydney's eyes. I am prepared to believe that this is important enough of a cause and I am very prepared to believe in this miracle. Who wouldn't give five dollars to save the lives of so many children and spare the pain of so many who follow their journeys.

What a great day. I honestly spent much of my day with tears in my eyes. I know I am a grown man with big, tough man hormones and not supposed to fess up to such things but for once in a long, long while I cried from sheer joy. I have been truly moved. The wealth of support is greater than I had imagined and the notes, emails, and phone calls have touched the heartstrings of our family. I want to share with the world my joy and thanks yet I still can not find words that are powerful enough to carry my message.

In the few short days since we offered our plea to the world we have heard from thousands. More importantly their words, their well wishes, and their lunch have not only touched us but many of the families that share our battle against neuroblastoma. For many hope has been reignited and all have found purpose. As the days have gone on more and more families have joined Sydney, Lynley and I in our cry to the world. Thank you for giving us reason to believe and the gift of change. There are now over 30 families across the world who have joined the effort. We are in papers across the country and we are even appearing on the radio. In fact, I was touched yesterday by a radio station in Chicago that carried our plea and the story of one of the many families. In many cities our stories are actually appearing on TV. It is truly amazing. You are affecting people. You are creating change. You will save lives. Thank you for your help and support. It is important that we keep fighting on and we keep spreading our message. Our five friends must continue to follow through, but it is working.

Sydney still had nausea today but was feeling better. So well, that we took her to the zoo in the afternoon. As always she had a wonderful time. It was so normal. I love to be able to take her to do her favorite things. By the way, if you ever are sitting and talking to Sydney and a cheetah walks by, call it a tiger. I am still quacking in fear from the wrath she bestowed upon me for spreading such lies. I offer this as fair warning.

I am happy to say that her speech has improved a bit and we are hoping that she had just been tired from a long day. I understood most every word that came out of her mouth yesterday even though most were typical two year old demands. I never realized that the word "please" could be used in such a demanding way. It really is funny. She says it with such intensity you would expect a four letter word to follow. Regardless, I am happy that she asks with such polite words and I am obliged to follow her direction. God love her.

Sydney was about the same yesterday. DeeDee visited from Dallas and they had a great time reading books and playing in her playroom. It was obvious that Sydney would tire quickly but, all in all, it was a great day with the family.

Another day has arrived and as I sit in front of my computer this morning I am at a loss for words. I had high hopes this morning of writing an entry to talk about all of the wonderful things that have transpired since Lunch for Life began. But instead, I find myself thinking of a little boy and his family who are facing a very tough time right now. I have been told by his mother that he will soon earn his wings. In the world of neuroblastoma all of our kids are angels but far to many of them become real. As I read this mothers words I can feel her pain. Although I can only imagine the fear and anguish that she has gone through in these last few weeks I know I am not the best to offer her comfort. I know there are thousands of parents who will reach out to her because, unfortunately, they have walked that road before. It has been a tough month for the parents on the neuroblastoma group in which I participate. Many of the families that I have come close to have lost their little ones. Although I don't know many of them personally, I see their words fly by my computer screen almost everyday, I read their websites, and when I can find the words I do my best to comfort them. And I know that right now their is a family out there somewhere in the world who is losing the battle and there is just nothing I can do about it. I can't fix it, I can't make it go away, and it hurts. So, as I take advantage of the fact that this is Sunday and I say my prayers, I offer my first for the comfort of a loving, bright, generous child whose strong spirit should be enough to keep him here on earth but too soon will be an angel and the next for his loving Mom who, like everyone one else, hates this damn disease and is searching for answers. May God find you both peace and strength very soon.

After thinking about this family it seems so simple to me. It makes so much sense. I would gladly give up my lunch to save his poor life and I think I would give them up for the rest of my life if I knew it would make a difference. I think everyone would. I wish I could make that deal with God this very minute. Wouldn't that do it. If I could only stand right next to this little boy, holding his hand and barter my lunch to save his precious life. I don't mean to be preachy and this is not a sales pitch. I have to make sense of it in my own mind. It is so real in my daily life and I have to make the connection. Had I started lunch for life ten years ago. Had I known about these many childhood cancers, had I gave up my lunch and made a difference then this young little angel would be playing on the playground instead of losing his life. That is my problem with lunch for life. It is a great effort and it will save thousands of lives but I can't hold up a child's hand and say this is a life you are saving. I can't definitively say that if you give up your lunch today you will save this child's life. I can only say that you will save a child's life in the future. I don't know who it will be. I don't know where they will be from, but there will come a day in the future that we can stand up and say we cured cancer and it was your lunch that did it. Is that enough? Will that make the connection? Will people understand? Will they feel it that moment? I know people care and I know people continue to donate and for that I am tremendously thankful but what will make the difference to the world. What will convince millions (because that is what we need) to take time from their busy schedules and daily lives to give up one lunch out of their lives for these kids. I know that if I could walk through the streets with a child in hand and said to everyone I saw, "If you give up your lunch today you will save this child's life." that they would do it without exception. So tell me, how does a father in Texas get that word out? How do I make it real? How do I convince the world that it is that simple? What do I scream from the rooftops? God give me the strength, the courage, and the words. I have a purpose.

I will write more much later in the day but for right now there is much to do. Lynley has a doctor's appointment at 8:00AM. As it is Monday, we will need to take a blood sample from Sydney down to the clinic at 8:30 AM. I am happy to say that at 10:00 AM we will be interviewed by ABC for a spot on Sydney and "Lunch for Life". At 1:00 PM we will have an oncology clinic visit with Sydney. Then, later this afternoon we will be interviewed by a couple of different reporters. To say the least it is a busy time. I can't believe that this is coming together. We now have over 50 families that have joined our quest nationwide and the donations are really starting to roll in. We just might beat this thing yet. Please remember to keep checking with your friends and keep spreading the word. We can do this. We will save these children's lives, but it takes all of us to do it. We have a purpose.

A lot transpired today and it is as good a time as any to update my diary. Lynley went to the doctor this morning to get "Rice" a check up. I am proud to say, we have a bouncing baby.............heartbeat inside of her. We were hoping to find out the sex but we just weren't quite far enough along. Everything seems to be going well and once again it is a weight lifted off of our shoulders --- until the next visit.

Sydney was in rare form today and I don't mean that in a good way. She was clearly miserable today. She wasn't sick, she just wasn't happy. It was the first time we have ever really seen her throw consistent fits and she was behaving poorly. We have seen stubborn behavior like this before but usually it was related to illness. I am a bit concerned as I don't understand why she was acting out. Perhaps she just had a bad day but she certainly was not herself. I am hoping to see a change tomorrow. In fact in writing this I have an idea on what to do. I shall try it tomorrow and see if it works.

Sydney's blood counts are continuing to fall but she was not in need of a transfusion today. We scheduled an appointment for Wednesday morning and we are pretty sure that she will be receiving either platelets or hemoglobin. I am happy to see her counts drop off a little earlier than they did after the last round of Cisplatin. To me it means that the sooner they go down, the sooner they will come back up. We shall wait and see if that theory holds water.

The interview....Let's just say I don't think I will be getting my own television show anytime soon. Janet St. James was extremely nice and she really took the time to get to know us and invest in our story. It was an emotional time for me. Whenever I picture the faces of the kids in my head or I think of the angels that have sprouted their wings over the last few months I simply can't contain myself. It either comes out in the form of focused purpose or tears. I still have trouble delivering the clear message that I want to. I have so many words to get out and I am still having trouble getting my message simplified. In my mind I understand the issues so clearly but when I open my mouth I feel like the words come out cluttered. I am trying to explain simple concepts with way to many words. After reading my diary I guess it is clear that I am never truly at a loss for words. I think they did a good job of simplifying the message. I don't know if I convinced the world to give five dollars to save thousands of kids lives but I definitely convinced them that being a parent of a child with cancer was something no one would ever want to endure. I just don't know if I made the connection. It will be interesting to see the finished product and I imagine in the next few days everyone will. It should air in the next couple of days. I still haven't decided if I am going to tell anybody that I am going to be on the news but somehow I think they will figure it out.

Another Angel earned his wings yesterday. God bless you Dalton. We will love you for always, we will love you forever, in our hearts you will always be.

Sydney has recovered from her bout of two year old angst. I had made a correct assumption last night and I have since remedied the situation. But how, you ask? Well actually it is very simple. Since the day Sydney was born, she has always been one of the centers on my life. Whenever I would spend time with Sydney, whether reading a book or just sitting alone, Sydney always new where she stood. I think much of that is the reason why she has faired so well. She knows that no matter what happens in life her mother and father are always there. For better or worse, Sydney knows that she has always been our number one priority. During her treatment she had this message further engrained and there has not been a day go by that she has not had that emotion reinforced. In the last couple of days as things have continued to grow with "Lunch for Life" Daddy has been on the phone or on the computer or otherwise distracted. It isn't that I wasn't with her during the many hours that we spend together each day but it was that she wasn't my focus. I believe that she was crying out for attention. So yesterday, I went back to putting my priorities were they belonged. I am not saying that "Lunch for Life" is not important but that I must remember where my priorities lie. I have been with Sydney everyday of her life but as the phone calls and email started rolling in my head was elsewhere. So, mental note to Mark. Yesterday, I spent my many hours with Sydney - with Sydney. My mind was on her and once again even while she was off in her own little world I was there with her. As Sydney would say, "All better."

It brings up some interesting questions. Have I been spoiling Sydney with the never ending attention? Are we creating issues for her and fears that she can not face life experiences alone? Is it right for a parent to shower such attention on a child and at which point does it become overboard? I may not be right but I think right now she needs her Mommy and Daddy and if it is attention she needs, attention she will get. I can not walk in her shoes but she will not walk this awful road alone.

I purposefully did not write in my diary yesterday. For me the space in my heart and on these pages were reserved for little Dalton. It is funny, I had never met him and I have never swapped words with his parents but for some reason I was drawn to his story. I have started to take these angel "wingings" very personally. Something that I had never really done before in life. When I read the words of these parents as they fly by my computer screen I can't help but become emotionally attached. Unfortunately, there is much sadness on the list. With each word of many of the parents I too feel their pain because although I have not walked with them to the end, the fears have become so much more real. It brings the reality of our lives so much closer to home. It is inconceivable to me that these kids are dying. As I read their stories, what generally starts out as a tear, now always ends in anger. I just never knew this world existed and one of the Marks is fighting back with all that he has. That Mark doesn't except the ways things are and he will defeat this monster if it doesn't defeat him first. I like that Mark because he doesn't give up and he is a fighter. I think one of the reasons that I am still able to put one foot in front of the other is because that Mark would have it no other way. At many times during each day he feels like a totally different person and I simply follow him because he has so much hope and strength. There is hope for all of the new parents out there that have just fallen into this world because there is something inside of a parent that makes them move on even though much of their mind rejects their cold hard realities. I guess what I am saying is that regardless of which Mark is out, one is leading the way and he has a purpose.

We spent a full day at the clinic yesterday. I kind of liken the experience to a complete overhaul with a deluxe paint job. We went in to the clinic with a rather broken down little 1972 Volkswagen beetle. It was low on gas, the oil was dirty, the filters were clogged, and the tire pressure was low. The windows were dirty, there was dust on the dash and the vinyl seats were cracking from over use. The paint job had faded (pale) and rust spots (bruises) were starting to appear all over the exterior. This poor little jalopy had certainly lost her luster and her little engine was sputtering. A team of mechanics went to work. They added new gas (blood transfusion), changed the oil (platelet transfusion), and even poured in a fuel additive (Tylenol) to really get the engine running. They changed the spark plugs and changed all the filters (new caps for her noodles). They monitored the tire pressure (leg hugs) and made sure they were at the optimal psi. They left no stone unturned. What came o