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

Hello and welcome to my diary. I think I should probably offer a disclaimer to those of you who do not know me very well. I am irreverent, sometimes egotistical and most definitely sarcastic but ultimately I am a normal average human being. I have three purposes for this diary. First, this is therapeutic for me. It allows me to get out my feelings and deal with my own pain. As a result, I am better prepared to care for Sydney, to care for my wife and to care for my family. Secondly, as a parent of a child with cancer it is my hope that this may help other parents in the same situation. I know that I am searching for the “right” way to feel and I am beginning to understand that there is no such thing. For you other parents I hope you find some comfort in my words and feelings knowing that there is someone out there that feels the way you do. Lastly, this is my gift to Sydney on her eighteenth birthday.

I will write how I feel and what I think. It won’t be appropriate or polished and definitely not politically correct. I have no intention of swaying opinions or influencing people. It is my words and how I feel. It might make you happy. It might make you sad. Knowing me, it might even make you mad. But it will make me feel better and hopefully it will give me the strength to deal with my own pain.

At this point I really don’t want to discuss this diary. I don’t want to know that you are reading it. It is still a little too personal and close. So please do not talk to me about it but if it makes you feel better then I am glad.

Happy New Year!! I know a lot of people that will be very happy to see 2005 enter the history books. I, on the other hand, was kind of comforted by good old year 2005. In retrospect it was a pretty great year. I like it because Sydney never showed any signs of disease last year. In fact, it was just about a year ago that we were making the decision to be treated at Sloan. We heard for the first time that Sydney may not have relapsed. Yes, it was this time last year that we were able to really start hoping again. I never forget where we have been and where we have come from. I fully realize how aggressive Sydney's disease was and I understand the implications. For that reason, I am both stunned and so very thankful that we had such a wonderful 2005. We are incredibly lucky.

Last year also brought Ainsley, our little beacon of sanity, into this world. At some point in our lives our kiddos over threw our parental government and ever since our family has been characterized by civil unrest and chaotic upheaval. The toddlers out number us and unfortunately they also believe they out rank us. Ainsley has been the calming force that gives us hope that all children are not destructive little menaces searching for chinks in our parental armor. She is our last hope at a nice, calm, and relaxed child. Then again, she is of Lynley and I's stock so and I guess we should just prepare for the worst.

Over the weekend we also received news of our upcoming scans. They have come quickly. Last Thursday we asked about getting them scheduled and ,bam, we will be starting tomorrow. Yes, tomorrow morning Sydney will be going in for her bone marrow biopsies and aspirates. The "surgery" is scheduled at 9:00 AM but we will need to be there at about 7:30 AM. The entire surgical process will only last about ten or fifteen minutes. That will be followed by about an hour of post op recovery and then we will be back on our way home to await the results.

I never ever like to say that I am not nervous about scans. In fact, I am usually riddled with fear. This time is a little better. We haven't really had any of the strange aches ,pains, fevers, or other symptoms that make a parent of a child with NB shudder. All in all, Sydney has really been a pillar of health. Sure we have had problems with ear tubes, etc. but that is all small potatoes. As far as signs of life threatening diseases go she appears to be doing pretty well. None the less, I am trying to find another bad habit to swear off and I am praying as hard as I can. As I always say, the next scan is always the most important one in our lives.

Okay, so I get more nervous the closer we get to scans. Lynley just came downstairs and gave me a good dose of fear. She is pretty worried about these scans because it seems to her like we find something whenever we aren't expecting something. I don't really think that is true. I do, however, think she is right on the mark with how one feels in this situation. I think it comes from experience at living in the childhood cancer world. When things start to return to some normalcy (You know, treatment is pretty much over, the kiddos are back in school, you are able to start going back out in public - yes, normal life stuff.) you realize what has been missed out of life. You know what the cost is to return back to the cancer world. You know what must be given up. You know every intricate detail of what life is like in the cancer world. It is these times when it is more scary. Think about it. The risks all feel much greater. The shock of receiving a positive marrow result when you already have cancer and are in treatment is not as great as that first marrow result when you entered the cancer world. When your child is healthy you don't expect the worst to happen. That huge shock becomes ingrained in your psyche. After that it feels like when everything is "normal" and healthy is when the bad things happen. It is because that shock is so memorable. That taste is still in our mouths. So, for as long as we go on, we will continue to fear normal and healthy because it was when Sydney was normal and healthy that she got cancer.

That may not seem entirely logical but it is a natural reaction. Besides, whoever said that this world was logical. I have always said there were two Mark's - the rational one and the irrational emotional one. They are both still here and I still understand both of them. I could always use logic to justify either of their feelings. It is days like this that I always feel them both.

It is time to go. I am purposefully praying for clear marrows and a healthy Sydney.

Yikes! I am way behind this morning. It must be from too much celebrating last night. Yeppers, Dr. Eames gave us a jingle last night and was happy to report that she had personally evaluated the slides and she saw absolutely no tumor. That is correct, No Tumor!!! Lynley and I were ecstatic. There is really no greater sense of relief. My best estimate of the feeling is that it must be just like winning the lottery - once every three months! Now this isn't the end all be all of marrows. We are still awaiting the bone biopsy results, the specialized testing results (RT-PCR), and opinions from Sloan but this is one notch on our belt and we are extremely pleased. I just can't get over how good it feels.

Trying to put my emotions into words is pretty difficult in this case. Childhood cancer does funny things to you. It is responsible for extreme highs and extreme lows. The good news is that when you get the good news you feel better than you ever have felt in life. The easiest way to explain the sensation would be this: Imagine you are walking through a convenience store with your child. You are smiling and happy. Your child is asking you to buy some candy. You are realizing how good he/she has been and are succumbing to their whimsy. You are happy with your life and thankful for your child. It is one of those moments in life that you truly fell appreciative for what you have. All of a sudden a gunman busts in the door to rob the store. He grabs your child and puts a gun to his/her head.

Good Morning! Well, yesterday was the first somewhat normal day that I can remember in quite a while. Sydney went back to school, the beloved in-laws went back home to Alabama, both Lynley and I were back to work, and Graham and Ainsley were at home with Martha. Lynley and I are still fighting a battle with the sniffles and all of the kids seem to still have stuffy noses. All in all, though, I think we are in pretty good shape.

We are still waiting to hear about the bone biopsy results. We expect to hear about them today. We don't expect to hear about the RTPCR results or opinion from Sloan for a couple of weeks. We have received next week's schedule and it is looking to be a pretty busy week. On Monday we have another appointment with Sydney's ENT to have another look at her ears. Neither Lynley nor I are expecting any improvement. Based on Candy's (the nurse practitioner at the oncology clinic) perusal of her ears it appears as if the tubes have continued to inch their way out. On Wednesday we have Sydney's CT scan (full body and orbits) scheduled and on Thursday she will be completing her MIBG scan. I have learned to expect the unexpected but I am feeling less nervous about the upcoming scans now that we know that the preliminary results from the marrows are clear.

In the meantime we are going to be indulging in normalcy. Evenings will be much like they were last night and the night before. We will come home from work and relax. With dinner already in the oven we will make our way out onto the back porch for a fun-filled evening of car riding, bubble blowing, and sibling rivalry. If it stays this warm (it was 84 degrees two nights ago) it might even break out into a massive squirt gun fight much like it did the night before last. I must admit Lynley was plain out gun powered. Sydney had the super soaker with water back pack, Graham had the hose, and Lynley was left with a chincy little water side arm. I was safely shielded in the kitchen behind glass and it was not below me to open up the window a hair to spray passers by with the kitchen sprayer. In the end everyone ended up wet. Well, everyone but me. The good news was that we all had a great time and that is ultimately what this ordeal is all about. It is about family. It is about being together.

This is one of those mornings that I absolutely hate getting up to open my email. I had received several email about Emily Emily is a little girl whose family I have become pretty close to. She is a year older than Sydney and she was diagnosed with neuroblastoma a little over a month after Sydney was in 2003. Her father was one of the people up at Sloan that I had come particularly close to and her mother and I travel the same circles in the NB world. Interestingly enough, Emily is the twin sister to MaryGrace who has never had neuroblastoma. Surprisingly there is a comparatively large group of twins where one of the twins has neuroblastoma and the other does not. This family has become our friends and are part of the small group we call long term stage IV neuroblastoma survivors.

Now to the email. Just as Sydney has received good news about her marrows Emily has as well. Unfortunately, their was also a suspicious finding around the area of her original tumor site on her CT. As they know, this in and of itself it may not be so alarming, but the doctor’s have said that they are to go New York immediately for a biopsy. Having had experience with so many other Neuroblastoma families, they know that this appears to be leading down a bad path.

"In all fairness, there is still the minute outside chance that this is the growth of a benign tumor, and we will hang onto that hope until we are told different. After all, her urine tests and bone marrow biopsies so far have all come back okay, but this disease is a sneaky monster, and we have to keep our guard up at all times, and if there is even a slight suspicion that it is coming back, we are addressing it now.

While in the face of bad news, we will count our blessings, as things can always be worse. Emily’s CT scans revealed that she has no disease in her brain and orbits (which is a common relapse point) and as for this mystery in her pelvis…we will wait until the biopsy results come in to face the worse, if at all."

This family knows the consequences. They, like us, have traveled this road for a long time and understand the implications completely. They once wondered what was worse - finding out whether your child has neuroblastoma or finding out your child has relapsed. Let's pray they don't find out. Once you know, there is no unlearning it.

On our home front, Sydney has taken a turn for the worse. Yesterday she sporadically complained that her stomach was hurting and in the middle of the night we awoke to find her in a puddle of vomit. It doesn't seem nearly as important but it somehow seems scarier.

So far this morning is not starting out as planned. Sydney had appeared to be on the road to recovery. In fact, yesterday we would have counted her amongst the healthily acceptable. We might even have called her cured. Perhaps I should back up a bit. On Friday I stayed home with the kiddos. Sydney continued to throw up throughout the morning. Her temperature was never really on the rise and she acted pretty normally. She refused to eat or drink much and aside from the nausea seemed to be okay. By afternoon we had gotten the nausea under control. We had given her Vistaril to settle her stomach which also caused drowsiness. She would sleep much of the afternoon away and make an early night of it. On Saturday she was much better. She still refused to eat much but it was clear that she was on the mend. She had a little to eat for breakfast and lunch and by dinner she was back to normal. Sunday was just an average day. We went out for both breakfast and lunch but spent the rest of the day at home. All of the kiddos seemed fine and other than some pretty significant honey dos it was a relaxing day around the house. You see, everything seems to be going pretty well here.

And then, late last night it all started up again. First it was Ainsley who sat up in her bed and reintroduced us to the concept of projectile vomiting. She would continue to throw up 4 or 5 times throughout the night. And then, Sydney decided to spike a 102.4 degree fever at around 3:30 AM. It is since then that I have been up. You see, we still have a rule to call the doctor for any temperature above 101.5. Additionally, we are generally supposed to withhold Tylenol until the doctor gives us the okydoky. Lynley has asked that I wait an hour or so before a give the doctor on call a jingle. Lynley figures we probably don't reserve the right to call at 3:30 AM so I sit here and wait and debate. I hate to see Sydney that uncomfortable. I think I will go give her some Tylenol. I had better run.

Well, we are broadcasting today from the place you might least expect to find us. Believe it or not, you can now find us in the pediatric intensive care unit at beautiful Cook Children's. As you might imagine yesterday was quite the whirlwind. We finally called the oncology doctor on call a little after 5:00 AM. Dr. Granger was the doctor on call and we agreed to treat the fever with some Tylenol and to bring her into the clinic first thing in the morning. There was then a flurry of activity as Lynley and I hustled to get ready. By 7:30 AM Sydney and I were at the oncology clinic. Lynley was at home with Ainsley (who was continue to puke on the hour) and Graham. It took a little while to get everything going at the clinic. Sydney pretty much slept in the treatment room as I tapped my fingers on the keyboard. I guess you could say that Sydney was lethargic. To me she was just tired from a bad night's rest but she was responsive. She certainly was not her fireball self but I didn't have the impression that she was critically ill. After some Rocefin and some fluid we were just about ready to go. We were going through the normal routine of final blood pressures, temps, etc. when the fun really began. Sydney's blood pressure was about 70/30 - which is low. To be honest, I wasn't terribly concerned. I probably should have been but I really wasn't. I have seen Sydney with low pressures on several occasions and it really did not shock me too much. I guess the major problem was that I have seen low pressures before but there had always been a reason. This time the reason was unknown and so everyone had to take a precaution and Sydney going septic was the concern. Still, to me, I was not too terribly concerned. Regardless, the next think I knew there was a flurry of doctor's and nurses in and out of our room. Minutes later there was a critical care transport team, a gurney, and a mountain of mobile equipment and we were being whisked off to the ICU.

The good news about all of this was that as we were leaving the clinic Sydney's blood pressure had recovered. She was now 90/40 and the transport nurse had just started the dopamine seconds earlier. As we were making our way across the sky bridge Lynley had called again. I had her on speakerphone for most of the action and she was now driving below us searching for a parking spot in an already overfilled garage. In minutes we were in the ICU. There was another flurry of activity as hoards of doctors and nurses rushed in and out of our room. Keep in mind that during all this time Sydney is awake and aware. I am just plumb blown away. I could not believe that all of this is happening. To me it felt more ridiculous than scary. I am still in shock that we are in the ICU.

Ever since we have arrived Sydney has remained stable. We have watched a lot of television. We have colored. We have talked. Life is pretty normal with the exception of the fact that we are in the middle of the ICU. Don't get me wrong. Sydney isn't perfectly healthy but she certainly does not appear to be critical. Here is where we stand. Sydney came in with low pressures, high fevers, lethargy, and a high white count. These are all indicators of a potentially life threatening infection. However, cultures so far remain negative. Our current theory is an infection coupled with dehydration. We think it is this combination that is producing the preceding symptoms and although it needs to be addressed it is not nearly as serious as it could be.

Well, I had better run. It is time to run up to the third floor for another cup of coffee and it is about time for another update for Lynley. I will update if anything changes.

Okay, so we are still in ICU, but the good news is that we really don't belong here. I personally think we belong in the nice comfortable confines of what we call home. The doctors seem to think that a couple days of careful observation in the hospital may be more appropriate. Nobody really believes that we should remain in the ICU and if every other bed was not taken we would certainly be elsewhere. So, for the time being we remain in our glass box in the ICU - the Dungan menagerie.

Ironically the sickest Dungan is actually not in the hospital. She is at home with Mommy. Ainsley came down with whatever this is and she is having a tougher time with the recovery. It is now 48 hours into her stint of vomiting and diarrhea and the puke spicket finally seems to be running dry. We are trying to keep the fluids flowing and we will see if we can't keep her out of the hospital as well.

Sydney is doing very well. We are now in Day three of our ICU stint and Sydney continues to refuse to show them any sign of sickness. She is yet to develop a fever, a positive culture, a funky blood pressure, or anything of the like. The biggest problem for her seems to be just keeping her entertained.

Today Sydney is scheduled for a CT scan. This is part 2 of her regularly scheduled quarterly tumor work up and it is just happenstance that we are in the hospital. With all of the funkiness we have seen over the past week we are simply hoping and praying for a nice clean scan. As we all now know just because you have nice clean marrows does not mean all is well in NB land. By the way, I am still waiting to hear about Emily's status. We continue to lift their family up in our prayers and hope that their funky CT findings are nothing but a benign enigma.

Well, I had better run. For some reason I don't have any internet access this morning and I need to call Lynley to tell her all is well and to check up on the rest of my brethren. I hope I get to post his soon but only time will tell.

Howdy, we are finally out of the PICU. Of course, that isn't to say that the accommodations or the medical staff weren't great but it is just really hard to keep a healthy kid down when your in the PICU. We now reside on our old hunting grounds in 3 North. In fact, I am behind in writing my diary because I have been out socializing (I mean discussing the medical condition of my daughter) with all of my buddies (I mean the qualified and caring oncology medical staff) Things are going very well and I am betting that we are booted out of here today. The stay has been fun but there are just too many sick kids at the hospital and it is time for us to get to someplace safe. ( I mean there is just too high a premium on beds.) The are much sicker kids waiting for a bed so it is time for us to go.

Sydney's CT scan went pretty well. I am not allowed to say I have received the results. So, given that, I certainly would not be able to tell you that they were clean. I also would not be able to tell you that the only notable findings were that her left kidney was substantially undersized (probably due to radiation), she has a sinus infection, and that a 3mm nodule was found in her right lung. The nodule is NOT (I repeat not) consistent with metastatic disease and it is believed that it could be something as benign as an air pocket. It was not alarming to the radiologist and they concluded that we should simply take another look at it during our next set of scans. You should know that if I knew any of this information I would certainly be asking some more serious questions of our oncology team today. I am not particularly concerned about the 3mm spot found on the lung but I do want to know why it is not believed to be disease. So riddle me this - Why is in not consistent with metastatic disease? Yep, I will need a Monday morning quarterback on this one.

Well, I had best be off. I have a mountain of work to do today and I am sure Sydney will be up shortly. I have been much too busy playing amateur oncologist this morning.

Home, sweet home! Both Lynley and I are exhausted but incredibly thankful to be home. Unfortunately if the little white blisters that are appearing on Lynley's throat are any indication of why my throat is hurting me we are not quite finished. It looks like today will be a good day for a doctors visit.

Sydney is doing well. She is happily at home although she continues to receive daily IV antibiotics. Graham was so excited to have his sister and partner in crime back home that he must have made 20 laps around our foyer screaming "Sydney, Sydney, Sydney" when we got home. Unfortunately, Ainsley continues to be the one that is really sick. She was continuing to throw up yesterday afternoon. I know everyone in the world has whatever this is but I think it is time to take Ainsley in to see Dr. Debbie if for nothing else than to check her for dehydration. (Yes, we are a little sensitive about that now.)

We still don't have any answers regarding Sydney's CT scans. This is one of those cases that I just wish that they would allow us to talk to the radiologist. The official consultation report states:

A tiny 3mm density is present within the lateral aspect of the right lower lobe. This could be a small area of air space disease. A tiny pulmonary nodule could be present at this location. The appearance does not appear to be that of metastic disease. This lesion was not appreciated on the previous study , and, in fact, no abnormality was present at this location. Follow-up of this region on the next examination should be performed. No other parenchymal lesions are seen.

Well, great, isn't that nice? But, it really does not tell me what I need to know. Yes, I know, it does not look like neuroblastoma and I am happy for that. But, part of the bonus of treating my daughter is that you get me to ask all kinds of annoying questions. I don't know what it is but I need to know why it does not look like neuroblastoma. Does it not look like neuroblastoma a little bit or is it total unlike neuroblastoma in every way, shape, or form. Secondly, if it isn't neuroblastoma, what is it? Yes, I can read that it could be a tiny pulmonary nodule, or air space disease - but what is that? What does it mean? What could this spot be indicative of - other conditions, the common cold - what?

I have a purpose and these radiologists just need to understand that. If I am going to snoop into my daughter's medical records the information needs to be digestible.

It was an incredibly relaxing weekend followed by a miserable night of rest. Graham and Ainsley must have awoken every hour on the hour. In our effort to get Ainsley to keep her formula down we began to feed her less in quantity but more often. It worked great from a nausea standpoint but the theory has some hiccups once you are recovering from you sickness. Ainsley is under the distinct impression that she should be allowed to snack all through the night. Now we have the challenge to get her back to normal even though she seems to have recovered from a medical standpoint.

With the kiddos on the mend we took it pretty easy this weekend but we did get the opportunity to run out to the stock show and rodeo for a couple of hours. This time we spent most of our time and money on the carnival side of the extravaganza. The kids really love going to see all of the animals but we weren't really ready to make that level of a commitment. After all, Sydney still has her "noodles" in and I imagine that would have been a huge infection risk. The good news is that today will be her last day of IV antibiotics and we will be deaccessing her this morning.

I want to thank Katy for her excellent explanation of the CT scan results. That is exactly what I needed to hear. She wrote:

"The fact that the nodule is called a density implies that it is a solid mass (not air). Now there are plenty of diagnoses that would fit into the described nodule, and no one diagnosis particularly fits the description. A common cold would not appear on the scan, as cold are upper respiratory infections. A teeny tiny infection could appear as a small nodule. Location of the infection helps determine the infecting bacteria/parasite. TB is classically located in the UPPER lobes not the lower lobes. Air space disease are simply diseases that occur in the air sacs of the lungs. Infection is a major cause of air space disease. Something 3mm would likely not be a very serious infection. I know nothing about the presentation of metastatic neuroblastoma in the lungs, but I would presume that since the radiologist stated it does not appear to be metastatic dz that it must either be in the wrong location for NB, or NB would typically appear as multiple nodules not single ones, or that the NB would be a different density than Sydney's. In my experience Radiologist will be over cautious in their interpretation. So if this doc states "the appearance does not appear to be that of meta. dz." feel good that she is feeling pretty confident."

It really helps to get this "inside" information. I hate bugging oncologists and radiologists about information like this, especially when we are dealing with something that is apparently so benign. They have bigger fish to fry and lives to save. I have a thirst for knowledge when it comes to medical information and it frustrates me when I don't have a relatively complete understanding. When it comes to neuroblastoma I have learned a lot. I know enough that I can make truly informed decisions but when it comes to medicine or medical conditions that are not directly related to neuroblastoma or exist on the fringes I feel just as clueless as ever. I guess that is why medicine is divided into specialties. This lack of knowledge can be frustrating when you can't comprehend even the simplest of things. You have to learn to trust people's interpretations - people you don't even know - and that can be difficult when you are dealing with your child's life. Oh sure, I could have gone and read up on interpreting CTs with this specific description but honestly I just did not have the time. Additionally, I have to also say that I am a little gun shy. After the strange MRI results that we had over a year ago that threw Sydney back into treatment I have learned that radiologists interpret the scans (interpret being the key word) and this is where the shades of grey come in. If you remember back, some felt that the MRI was completely abnormal and consistent with metastatic disease while others felt it could have been something as benign as a shin splint. From that point forward I have needed some reassurance. I need to know whether this nodule in Sydney's lung is or is not neuroblastoma (for sure) and if we are "guestimating", well, I needed to know that as well. By giving me insight into the types of things that a radiologist would look at to determine if this was disease I certainly feel better. It seems more clear cut than I had suspected.

One week down and Sydney has finished all of her IV antibiotics. She is noodle free and ready to reenter the world. This morning she will be returning to school. Graham and Ainsley appear to be on the mend as well. I was expecting that it would take much longer to cure Ainsley. I was counting on a couple of days to get her feeding clock set back to standard time but believe it or not it only took one two hour stint of screaming to get her back on track. I think their nanny thought I was cruel though.

At about 11:30 Ainsley had some bananas and four ounces of formula. She had been up most of the morning and Martha put her down for a nap. By about 12:15 when I arrived home (she had only been asleep about 25 or 30 minutes) she was already starting to squirm. By 12:30 she was in a full born cry. Lynley and I checked all of the usual suspects. Her diaper was clean. She was healthy. No signs of injury. Yep, she was just hungry again and she thought a snack would foot the bill. We elected to use this opportunity to make our point. Eventually Lynley went back to work and I went back to tapping my fingers on my laptop in the den. Ainsley wailed away. At 1:00 PM, distressed by all of the wailing Martha went in to try and calm her, when that didn't work she tried to sneak a bottle in. I caught it before it hit her lips and told Martha to wait. I knew it was driving her nuts so I let her go home early. Ainsley would continue to wail solidly for another hour. I checked on her periodically to make sure she wasn't in any distress and to ensure there wasn't another culprit for the cry. At 2:00 PM she finally fell asleep. That was a lot of crying for a little girl. She was tired. She woke up happily at 3:30PM. She was starving and wolfed down another bottle in no time flat. She was full for the first time in over a week It would be dinner time before she would feel hungry again. We fed her. She slept through the night. She only awoke once. Peaceful slumber.

It was a pretty nice and boring day back in the grind. Yes, much better than the start to the week before. And to think just one week ago we spent our first night in the ICU.

Yesterday was our first day back to normalcy aside from the fact that Sydney told me a bold faced lie regarding her nap. I have to admit it was a first in my tenure as an official Daddy and I still don't know exactly how to handle it. Everyday when I pick Sydney up from school I get a report from her teacher. Usually we cover a little of what they did during the day but I always get an update on whether she took a nap. Nap taking is important stuff in our family and we take it seriously. During school they have nap time and we treat it just as importantly as we treat the rest of their curriculum. So, if there is a nap on the schedule (which there always is) then it is Sydney's job to take a nap. Of course, she is also still of the age where a nap is critical to our continued sanity in the evenings. To make a very long rant short, Sydney is required to take a nap everyday and if she does not take one at school then she has to take one at home. Hence the reason the announcement of Sydney's daily nap taking skills are so critically important.

Regardless, yesterday Sydney declared a successful nap taking experience. Then, in my daily parent teacher conference, I learned that Sydney did not, in earnest, take a nap. I confronted Sydney on the accuracy of her statements. I asked if perhaps she just closed her eyes during nap time and did not actually go to sleep. She said no. I asked if she just rested (a rest means that you just pretended to sleep in Sydneyan). She denied it. I asked if perhaps she just took a very small nap and she denied that as well. Worse yet this was all in her teacher's presence. Here I had an adult, her teacher, who had nothing to lose by telling me that Sydney did not take a nap. On the other hand, I had my daughter, whom I am to support and believe in and all that goodly stuff, who had everything to lose and was telling me something else. I want Sydney to know that I believe in her but I also want to not have her lie. I had just done my best to try and give her a reasonable escape and she still stuck to her story.

I figure that at this point it is best to let this incident slip into the history books. I don't think this one incident is going to be life shaping. Well, that is, I don't think it will be life shaping for good but, perhaps, it could be for the bad. If she is lying and I confront her she will (a) know that I don't trust her and (b) get a small slap on the wrist for lying. However, if she is telling the truth because the teacher happened to be looking the other way when Sydney fell asleep for a split second (or whatever the improbable excuse is) my confronting her and not believing her could have disastrous effects to her self esteem. She needs to feel her Daddy and Mommy's support and that is not something that seems worthwhile for me to dash over this one singular incident.

So, I will wait. I will watch. If it happens again I will be forced to put an end to it. But, for now, for now, I will believe in my purpose even when it seems wrong.

It appears that yesterday will go down in the history books as completely normal. There were no health issues and no outrageous lies. I am happy to report that Sydney did take a nap at school and thankfully the teacher report supported that finding. In fact, the only excitement was a broken coat hook in Sydney's cubby which we replaced. Yes, we are living like the stars.

I have been waiting on an update for our friend Emily. The last that I had heard was over the weekend. The family had made it to New York and Emily had her surgery to find out what was growing inside her tummy. Based on the surgeons report it appears to be neuroblastoma and the family has been sucked back into "the world." My senses all tingle and the hair stands on the back of my neck just from reading her father's words. It is hard to explain the sensation that a parent feels when their child's life hangs in the balance and then the added dimension of everything that makes up the cancer world makes it completely incomprehensible to someone who has not walked through it with their child.

At the beginning of our journey I talked frequently about the two Mark's. One of them is in control. He is in charge. He can think and act clearly. The other is emotional and unpredictable. He feels a weight on his chest and it feels as though his soul has been sucked out of him. He is devoid of happiness and hope and can see nothing but pain on the horizon. The only moments of any comfort can be found in the presence and arms of his child.

I have come to believe that these two realities exist in many of us and I could see it in Emily's parent's words. They described the moments before they were delivered the news as rational. They discussed the possible paths their lives might take and what they would do if the worst did, in fact, happen. This sounds like the discussion of a family in charge. In fact, this sounds like just about any cancer family that has been through treatment and made it out the other side. They have become adept at making life and death decisions for their child. They know the trade offs. They understand the medicine. They know the disease. They know the routine. They know how to get the job done. There is hope.

I have actually overheard conversations of many people having these discussions. There are many times I have seen families outside at Cook's having these very discussions. People who have not been there think it is strange. The discussions aren't necessarily cold but they are delivered with out true emotion. It is hard to believe that people are discussing their very own children. They seem so in control and are in stark contrast to the others, perhaps stepping into this world for the very first time, who are entirely full of emotion. Those families are living in the other Mark's world. Those that have been there before, though, they are exact - almost as if the discussion was amongst the doctors. "We will do this, followed by this and this, and then we will do this if this happens and we will do that if the other thing happens. Agreed? Good. Done." They are people of action and solutions. They have experience and are ready to take anything on.

And then that moment comes. Those words that bring all of the emotions back. It is that very second you realize that neuroblastoma is really back in your life and you can take everything you just said and throw it out the window. Your heart is broken and the cursed reality hits home. Logic and planning do not matter. All you feel is pain and you wonder if you will ever feel normal again. Will you ever breath again? Will you have another moment in your life where you do not feel this pain? Will you ever feel whole again?

What a great night of sleep I had. I think I am still recovering from our hospital stay. To be honest, I really kind of like being at the hospital. I always feel so safe in the hands of the doctors and nurses at Cook's. But after all of that is said, I always feel like it takes forever to recover. When I am there I never really sleep deeply. My eyes are closed and I am dreaming but it is though I am dreaming about reality. It is as though I am always concious of what is going on and my senses are super alert. As a hospital dad, I have finely honed skills. I can differentiate every beep and breath as good or bad without fully awakening. It just seems to take forever to recover. Today, though, I have come full circle and I finally feel refreshed.

Yesterday was another typical day. There was no high drama and no broken hangers in Sydney's school cubby. Unfortunately, that left my focus at work where I was busy through both breakfast and lunch. Today will be much the same. Sydney has an appointment with her ENT and we should get an update on her ear tube "rejection." I am pretty sure that one of the tubes is completely out and the other is either out or just barely hanging on. Who knows where this path may lead us. I doubt that new tubes will be in her short term future and I imagine it just means that we will be reentering the world of frequent ear infections.

We are hoping for a quiet weekend. Cousins Rich, Laurie and family are coming into town to visit their son Rob who plays on the TCU basketball team and we are hoping to get to spend some time with them. Of course, there is a mountain of honey-dos and I am sure the kiddos will need active entertainment. We are expecting rain over the weekend so I imagine it will take some effort to keep them occupied indoors.

Sydney's appointment on Friday went well. It turns out that her ear tubes are exactly as expected - one is out and the other is just barely hanging on. We discussed several different alternatives with Dr. Lowrey but it appears that the plan centers around more ear tubes. His idea was to use longer tubes for this go around but I am still a little gun shy. We don't know for sure what caused the rejection in the first place. Dr. Lowrey was eager to accept our theory that it could be related to the GM-CSF. Dr. Howrey though, did not think that the response generated by the drug would necessarily cause the rejection. Regardless, we still do not have an answer and I am not real excited about putting Sydney through another ear poking unless we can prevent the rejection in the future. For this reason Dr. Lowrey has suggested using the longer tubes and I have suggested at least postponing the procedure until we get back from this treatment cycle in New York. To me, this is a two pronged attack. First off, if we schedule the procedure right when we get back we will have approximately 7 weeks before another treatment cycle. This may give her ears enough time to heal before they are subject to the effects of immunotherapy. Secondly, every treatment cycle we do is another one that is closer to HAMA and the end of this trial. We are so close to a HAMA I can smell it. There is a good chance that this could be our very last round and if that is the case then postponing her ear poking for another couple of weeks would certainly be worth the wait.

Sydney and the kiddos had a pretty good weekend. On Saturday we spent some time with family and helped celebrate DeeDee's birthday. We all went out to dinner and celebrated in our Disney Princess birthday hats. Luckily no one realized that we were not celebrating one of the kid's birthdays. In fact, Sydney liked the hat so much she decided to wear the princess hat all through the rest of the weekend. I am happy to say my doll playing son despised his Disney Princess birthday hat and was more interested in flicking his food across the table with a fork. Ainsley, of course, was the perfect little angel and obliged our hat wearing by dawning her princess hat for as long as we chose. She is a clever one and I am sure she is just biding her time until she can actually walk and fulfill her escape plan.

It is about that time in a child's life that we have to make some tough decisions about Sydney's schooling. Yes, Yes, Sydney is at that age that we have to decide when and where she will be going to preschool. It is a decision not to be treaded on lightly and has left Lynley and I with hours of discussion. The problem is that hours of discussion can be quite difficult to come by in the Dungan household. For instance, Lynley and I were discussing the risk and rewards of sending Sydney to various private schools throughout Fort Worth last night. We were in the kitchen cooking dinner. Ainsley was on the floor rolling from room to room chortling in toddler speak. Graham had rolled the pack 'n play into the kitchen, climbed up into the diaper changer, and was watching television while sneaking the occasional pretzel that he had snuck from the pantry. Sydney, the future Nobel Prize Laureate and subject of our mindful discussion, had zipped her self up in the pack 'n play travel bag and was playing inch worm across the kitchen floor. Mind you she could not see out of the vinyl bag and would bonk her head into a cabinet door and let out a laugh every time she made it across the galley kitchen floor. Yes, the chances of us spending $11,000.00 per year to go to private school where becoming less and less likely the more she scooted around. With every bonk of her head the likelihood that the money would be used for some padded walls and a nice comfy jacket were becoming more of a reality.

All kidding aside it is a particularly difficult decision. There is no doubt that Sydney will have some challenges as she makes it through her school years. The question becomes "Will private school be a more nurturing environment for her to succeed?" Will she even be allowed in? I don't even know what the likelihood of a school accepting a child with cancer may be. I don't think we are enough of a minority to even get token status. There is no question that there are some increased risks of accepting a child with cancer into your institution but I also know that it would be considered discrimination to not allow her every opportunity. The fact of the matter is that she is intelligent and regardless of what her future holds I am sure she will be in the top of her class. The trick is going to be to find an environment that is right for her and a support network (teachers and administrators) that is aware and eager to face her challenges head on.

It looks like our discussions have leaked into this morning. I don't know if I can concentrate on this discussion with Lynley without the kiddo chaos. It is so darn quiet. Well here goes nothing.

Good morning! Yesterday was incredibly hectic and it looks like today will shape up to be much the same. We received a call from Yichih (one of the nurse practitioners) at Sloan Kettering and they have asked us to postpone our treatment for another week. Apparently they are over booked and the beds are full of kiddos getting 3F8 treatment. There are 14 NBers scheduled for 3F8 during the two weeks that we were supposed to be there. That does not even include all of the kids with neuroblastoma that are receiving chemotherapy, etc. The fact of the matter is that they are jam packed. We had already booked our flights but we are rearranging to see if we can reschedule. We will just have to do our best to see if we can make it work out financially. The fact of the matter is that all of the families that will be there that week are dealing with children who have neuroblastoma, most are from out of state, and all have made plans to be there. I have to believe that it is less critical (from a time perspective) for us to be there that week than many of the other kiddos. For instance, I am sure that there are kids fighting active disease and the timing of their treatments are far more important than ours. So, in short, we are making a mad dash to see if we can do it without throwing the entire world out of balance. This time I was taking Sydney by myself and Lynley was staying home with Ainsley and Graham. The problem is that Martha, our nanny, was also going to be out of town so Lynley's dear, sweet, super-spectacular mother (I got in trouble for referring to her has my dear-sainted mother in-law) was flying in to help take care of thing 1 and thing 2. So, at the very least, we have a couple of tickets to consider moving around. Regardless, I have to run. I had a relatively late start this morning and my wife has put me on notice to get it in gear. It is unfortunate because I had much to talk about. Thank you so much for those of you who wrote in with advice about schools. I will get back to that soon. Oh, and you would not believe what Sydney did yesterday.

Unfortunately this will be another quick update. Today will be another whirlwind. Lynley wrenched her back yesterday morning and has had a really difficult time getting around. She spent most of the evening flat on her back on our massage mat. She looks like she feels a bit better this morning but she is by no means healed. She still walks like she needs a cane and some blue hair. On another note Sydney woke up early this morning to tell us that she had an ear infection. Luckily, we already had a clinic appointment scheduled for today so we will certainly have it checked out. She is pretty good when it comes to diagnosing her own ear infections. After her clinic visit we will be meeting with Miss Nicole (Sydney's teacher) at her school. This is an official parent teacher conference and it should be interesting. Ordinarily I would expect to hear good things but after the episodes of the day before I am going to reserve judgment. When I went to pick Sydney up at school the other day she came running up to me to tell me that she had taken a nap. However, it did not take long to hear the rest of the room chime in to tell me that she did NOT, in fact, take a nap. I once again gave her the opportunity to bow out gracefully by admitting to another minor charge but she did not catch my drift. After a few minutes of discussion she fessed up. The next thing I knew she had disappeared from the room. I had assumed that she had either (a) gone to the restroom or (b) elected to get a head start out to the "Daddymobile". I quickly gathered up her school stuff and scooped Ainsley and Graham up in my spare third and fourth arms. As we made our way out of the room I realized Sydney was gone, completely gone. She was not outside in the car and she wasn't in the bathroom. Panic set in but it was short-lived. It only took a moment for the reality to set in that I was not dealing with an abduction but rather a strong willed 4 year old. It took about 15 minutes for myself and 3 other teachers to find her. She was hiding in the school kitchen. When asked the question "why?" she simply said that she did not want to go home and take a nap. It was somewhat embarrassing that my child took to running away and hiding two days before our teacher's conference. It was bad timing. But, in a way, I was kind of pleased. Sydney made the connection. If she does not take a nap at school she will have to take one at home. She realized that there were consequences for her actions. She made this distinction completely on her own and you know the first step in the road to recovery is admitting that you have a problem. That is rule numero uno in un-nappers anonymous. Regardless, after his episode there were some serious discussions. I don't even know where to begin. Let's just hope she wont be telling any more lies and she wont be hiding from her punishments in the near future.

Well, with Sydney, we apparently got the self diagnosing model. She was right on the money. She has a lovely raging ear infection. Our trip to the clinic was quick. It is so helpful when your child can tell you that she has an ear infection and that she needs some biaxin, a decongestant and some "no owie" drops. We saw Candy, the nurse practitioner, and aside from the usual pleasantries she quickly confirmed Sydney's diagnosis and sent us on our way with some prescriptions. It was so nice to not leave there on a stretcher surrounded by the medical transport team.

We followed our trip to the clinic with a parent teacher conference. I am both pleased and shocked to announce that my little non-napper is doing extremely well. We carefully went through the 3 page assessment of Sydney's skills with Miss Nicole. Sydney had met all of her basic skills and had achieved most of her advanced skills. There were only one or two advanced skills that she needed some work on. First off, she doesn't spell her name correctly when she writes it. She apparently writes "sdyney." That really isn't the point. The point is that our stellar four year old can write her own name. To make a very long review very short, Sydney is doing extremely well, especially considering her history and the fact that she misses so much school. She has really dove into learning and she is flourishing. I have to be honest, it was just one of those moments that I was even prouder to be a Dad (if that is even possible). I was so completely swollen with pride. I puffed up and I walked with a swagger the rest of the day.

Well, I had best be off. There is a mountain of work to do today and I can hear the urchins scurrying around upstairs. This afternoon I will be flying to Chicago for a Children's Neuroblastoma Cancer Foundation meeting and I will be there through Sunday. Wish Lynley luck - she will have all three kiddos.

It certainly was a whirlwind weekend. I come away amazed every time I attend a function of the Children's Neuroblastoma Cancer Foundation. Yes, this was just a board meeting but still my heart was touched. There is an energy and spirit that is hard to describe. Everyone in that room has been touched by neuroblastoma in some way but it goes much deeper than that. It is our little warriors and angels. It is the spirit of our kids that fills that room. You just can't help but be moved. It comforts my soul to be part of a group that shares the same dreams and aspirations for these kids. It is personal.

The foundation is absolutely bursting at the seams. We have so many things going on and just not enough hours in the day. People think I work hard but, to be honest, I don't even somewhat compare to what Pat Tallungan and others do on any given day. Pat, especially, is my hero. It is her that has inspired me to do as much as I could. When our family walked into this world it was she and the CNCF that was right there for us. They were right there at the moment we needed them to offer comfort, support, and education. I have made better decisions regarding Sydney's treatment because of this organization and the fact that Sydney is alive today could be a testament to that. That is how strongly I feel about her and the CNCF.

For me it is as if I have found a home. It is so comforting to be surrounded by a group of people that all share the same passion and conviction. People can be passionate when it comes to what they do for a living. Those are the people that are fun to follow. They are great to be around and their energy is contagious. It is these passionate people that create change, innovation and greatness. The passion here though is ten fold. The passion that drives these people is from their heart of hearts and from the center of their souls. The passion comes from the face of a child and I don't think there could be any stronger driver. Being surrounded by the passion in this group goes beyond contagious. Somehow it alters your soul.

The kids had a pretty good weekend. Sydney continues to battle an ear infection and has produced a fever every evening. However, this has not slowed her down. Other than the fact that she gets warm in the evening she seems to be going full bore. All of them kept there Mommy's hands full. I think Lynley may have been glad to have me back home. Today we will be meeting with the administrators at Southwest Christian School which is one of the potential private schools that we are investigating for Sydney. It will be a full and busy day back in the grind.

As it turns out yesterday was as busy as we had planned but not for the reasons that we had thought. At about 7:00 AM we received a call from Martha. She has come down with the flu and it will most likely be a while before we see her again. This left us scrambling to find someone to watch the kiddos in the morning. Luckily DeeDee was available and she came to spend the morning with the kids. At about 9:30 AM Lynley called and said that our meeting at Southwest Christian had been cancelled. Apparently, the director of admissions' family had been touched by cancer and she was caring for her mother in the ICU. We decided that we would reschedule at a time that was more convenient for her.

Today will be a fairly long and grueling day for Sydney. We are now two years post transplant and it is time to be reevaluated by the neuropsych team. I am hoping to hear good things but after their last report I am somewhat suspect. The testing will last most of the day. We will arrive at around 8:45 and I imagine it will be early afternoon before we see sunlight again. For Sydney it will be the toughest. I remember last time I was amazed at the fact that she (at two and a half mind you) sat still for about three hours while she was being tested. By the way, in general terms, they concluded that Sydney had an inability to sit still, focus, and had a short attention span. She sat still and answered questions for three freaking hours. Any way, I remember reflecting back on her last round of test and thinking how well she did only to be thoroughly disappointed by the report. I don't know the answer. I am fully willing to accept the fact that I am biased and perhaps my objectivity is shot but I will also tell you that she has been evaluated several times since and no one came to the same conclusions. To be honest I just think it is nearly impossible to assess a two year old. For that reason, I am excited to try this in this new era of kiddodom - the fantabulous fours.

Yesterday I met a new Dad that is just stepping into this world. His eight year old daughter is being treated at Cook's. Their story was a little different than what you hear from the typical eight year old that has neuroblastoma and I am hoping and praying that it is a good indicator of prognosis. She was originally staged as a 2A. Luckily they were able to resect the tumor up front before any rounds of chemotherapy. Unfortunately, the tumor would come back and eventually spread. They are now sitting in the shoes of many of our families. They are back in the hospital starting their first rounds of chemo and preparing to face the long road ahead. We talked for well over an hour. His question was: "I feel like I have a hole in my chest, will that ever go away?"

What a day yesterday was for Sydney. They tested her up one side and down the other and then inside and out for good measure. They only met with Lynley and I for a short period of time and that was separate from Sydney. She was tested from roughly 9:00 AM to 11:30AM with a 10 minute break. We then ran home to grab a bite to eat. After that we went back to the hospital where Sydney was quizzed for another hour or so. To say that she was completely worn out would be an understatement. She was mentally and physically exhausted. It will take a couple of weeks to get the final results back.

I would say that today is our first day back to reality this week but that would be a lie. Sydney's ear infection continues to be an issue and we have scheduled a clinic visit this morning. She continues to get a low grade fever in the evening, gook (technical term for the viscous liquid puddling in her ear) continues to pour from her left ear, and her ear continues to hurt. This could just be the byproduct of an ear infection that is taking a while to clear up but, none the less, they have asked to see her.

Is it just me or does it seem like Lynley and I never get a chance to work. Both of us are at our wits end. The work continues to pile up and everyday it seems as though we have something else to do. We are both feeling overwhelmed and buried. This is one of those battles that we have had over and over throughout our journey. We both want to be there for our children. As far as we are concerned our family comes first. It is especially important to both of us that we be there for Sydney when it comes to anything medical. We both like to attend her clinic visits, hospitalizations, evaluations, etc. It is important for us to be there emotionally but we also find that we make a good team. It is not that we don't trust each others judgment. We do. We just feel like we make better decisions when we are both there to participate in Sydney's care. The problem is that caring for a child with cancer and a family of five is busy and there is a tremendous amount to do. In fact, I can not remember the last week that I did not have to be out of the office for Sydney on at least two occasions. Don't get me wrong. I am not complaining. I want to be there. It just makes balancing life and work that much harder. I suppose that Lynley and I could take turns caring for Sydney and shuttling her back and forth to her many medical commitments but I really don't want to. I want to be there. I am her Daddy.

Now this is the exact reason that you should not whine and complain. Guess where we are. Yep, room 3005, 3 north, Cook Children's Resort and Day Spa. I should know better. It could always be worse. I am officially being blamed for this hospitalization. There we were in the clinic. Sydney was getting a nice noodle full of Rocefin while watching a movie and I was behaving, sitting quietly in the dark room just tapping away at my computer. There had been a parade of healthcare professionals to visit us but Candy was our most recent Sydney inspector. Originally the plan was just to hop in to top off with some IV Rocefin. However, as the afternoon wore on, her fever would continue to climb. Candy and I gave her the once over. She seemed perky enough and her ears were on the mend. The only kind of unexplained problems were the all over aches and pains. In passing I mentioned that she seemed warm to me. This is the key point because the fever is what landed us in the hospital. Mind you they would have eventually taken her temperature. The always finish off a clinic "top off" with a blood pressure and a temperature check. Regardless, when they took her temperature she was at 38.9 C (102+ F) and that sent us packing. Of course, they all blame me. But I think they are all just big chickens because they did not want to face the wrath of Lynley when she found out that we landed in the hospital. By the time we reached our room on 3 north the word had spread. They were getting their words straight before Lynley showed up. "Yep, it is Mark's fault. Had he not pointed out the fever they would have sent you home." Chickens!!

So, we are here. Everyone believes it is because of the ear infection. Nobody really thinks we are dealing with something more sinister. No one has mentioned sepsis and no one thinks we will be here for very long. But, we are here - just in case. We will watch and wait - hopefully for nothing. I , on the other hand, need to learn to keep my mouth shut. No, not about the fever. I need to stop whining and suck it up, make the best of what I have. There are bigger fish to fry.

Good Morning!! It is day 3 of Sydney's hospitalization. I imagine that we will be going home today assuming Sydney does not spike a temp and the cultures continue to come back negative. Our presence here is somewhat unfortunate. Everyone knows that Sydney's fevers were from the ear infection. Unfortunately, no one could say that it wasn't a result of sepsis. So, as part of the oncology protocol we need to be admitted for antibiotics and observation. We really have two problems. The first is the never ending stream of ear infections. As long as we continue to have them we will continue to have fevers. We need to find a way to curb them. The tube placement was supposed to curb all of this but with the rejection that did not go over so well. Next time we will plan to put in a different kind of tube which is a bit longer and less likely to be spit back out as quickly. In the meantime, I have suggested that we treat her ears prophylactically with bactrim. This should get us through the hurdle of our next round of treatment and into position to have tubes placed once we get back into town. The other problem is Sydney's port. The port and the risk of a line infection leading to sepsis is ultimately what lands us in the hospital. As long as we have the port in we will continue to find ourselves in this position. The port is great in that it (for the most part) takes the place of a peripheral IV. Because of the port Sydney does not have to have an IV placed every time she is at the clinic or in the hospital for treatment. So why should we get rid of it now? Well, for one, Sydney's port is well over a year old which is about as long as most oncologists want to keep it in. Secondly, she is nearing the end of treatment and the need for a central line is more just for the sake of convenience. However, when the risk on infection outweighs the convenience it is about time to have it taken out. So, for now we wait, but I imagine it will be coming out after our next visit to Sloan.

Well I best be off. I have a mountain of work to do and even a larger mountain in my inbox.

Home, sweet home. We were discharged from Cook's on Friday morning. It is great to be home but I would not really go as far as to say that it was relaxing. On Friday evening we went out with the Robertson's and the Moncrief's. Sydney was ecstatic to see Truman and the gang and I was just thankful to be out and about town. With five kids scurrying around the restaurant I think we served as excellent birth control. For some reason Monty and his blushing bride no longer have any desire to have children after that experience. Now that I live in the land of parenthood I really have so much fun watching people who do not have children react to a table full of kiddos. There is nothing like the face of someone walking up to the dinner table when it is surrounded by five high chairs.

We had a pretty good weekend. We still have some open items related to our next trip to Sloan. We finally heard back from them at the beginning of last week and the good news is that we were to travel at our regularly scheduled time. The plan is still to begin treatment on February 13th. Unfortunately, we received a call on Friday afternoon stating that there was no room at the Ronald for us to stay. They had already moved our reservation to the following week and we were basically out of luck. The Ronald is going through a major renovation and they are short by about 18 rooms due to the remodeling. They are going to try and fit us in at some point but, for now, we are left scurrying for a place to stay. Diane is supposed to call us today and hopefully have a place for us to stay.

The other problem that we are having is related to one of Sydney's treatment drugs. On Wednesday she is supposed to start her GM-CSF shots. The problem is that we are having a heck of a time trying to find someone to fill it. Even the pharmacies that we have used in the past are saying that they can not get a hold of it. Today we are going to try a few other places and if worst comes to worst we will have to have it FedExed from Sloan.

Well, there you have it, our life in a nutshell. I had best be off. We are scheduled to meet with Southwest Christian School today and there is still a mountain of work awaiting me. This time, however, I will not complain about it. We all know what happens when you do.

Wow, yesterday was an incredibly busy day. Where do I begin? Let's start with Southwest Christian School. I was absolutely blown away. Well, I was not blown away by the facilities. They were adequate. But, everything else was borderline stupendous. I was amazed by the teachers, the teaching methods, and the whole philosophy of the school. The one thing that touched me the most though was the work of the children. I think the little Einsteins were incredible and I was in complete disbelief at the quality and level of work that they were doing. It was absolutely mesmerizing. Not only did the kiddos appear to be incredibly talented they also seemed to be truly excited in learning and engaged in the educational experience. They appeared happy and well-rounded. This won't be the last school that we will investigate but I am pretty sure it will remain near the top of our list. Sydney was evaluated for roughly 45 minutes. We were not present for the testing so I can't really tell you much about it. It will take a couple of weeks before we hear anything more. I am interested to hear their take on Sydney. It seems as though they would probably lean towards placing her in pre-K but we might all be surprised. With her age being in the middle of the summer she could really fit into either class. Looking at the size of the kids in the kindergarten class I would think she was probably a couple of years away.

After our visit to the school we dropped Sydney off at our school and then Lynley and I began our trek to try and find some GM-CSF. After several phone calls we were not having any luck. In fact, we had heard that the 500mcg vial of Leukine (GM-CSF) was actually being reformulated to be preservative free. This explained the difficulty in attaining the drug as the manufacturer was preparing to put the new version on the market. The only GM-CSF that we could find was the 250 mcg version. It is the same drug, the only difference is that it is only available in a powder (lyophilized) form. We have used both versions. Realizing that we were running out of time we opted to go ahead and just get the 250 mcg version. After a couple of hours we heard back from the pharmacy. The insurance company was denying coverage. Yes, brilliant BCBS of Texas, once again, was throwing their weight around. They wanted a preauthorization before they would cover the medicine. Let me put this into perspective for you. This is like an insurance company declaring that they would not cover regular strength Tylenol when you had a prescription for extra strength Tylenol (even if extra strength Tylenol was not available.). If that does not convince you of the ludicrousness of this then consider this. It is the same as if they would not cover Tylenol if it came in pill form and only if it came in capsule form. In our case, the only difference is the amount of the drug in a vial. It is ludicrous and frustrating and yet another great example of how BCBS goes out of their way to make your life that much more difficult. They figure we are too busy caring for our child to fight and the sad matter of the fact is that they are usually right. It is this kind of constant bombardment of denials that slowly breaks you down to the point that most people finally give up. It is criminal. Regardless, it would have been impossible to get the paperwork filled out and get an answer from BCBS so we elected to have the drug FedExed overnight from Sloan. Thankfully they still have the 500 mcg formulation.

The remainder of the day was much the same. We are still looking for housing for our trip to Sloan. I hope to get that clarified this morning.

Good Morning! Yesterday, marks the first day in quite a while that Sydney went to school, Lynley and I went to work, and Graham and Ainsley stayed at home with Martha and there weren't any doctors visits, sickness, schools to investigate, or any other reasons to leave the office. For me, it was a completely atypical and abnormal feeling. What was I supposed to do with myself? Work? Constantly? I don't know if I am capable of that anymore. I work under the gun, between treatments, in the hospital room, during naps, when my wife and kids aren't looking, on the floor, in the waiting room. I can' work in a quiet structured environment behind a desk. Where are the beeps? Where are the interruptions? Who can concentrate in such ludicrous quietness? I found myself constantly stepping out of my office and into the hallway looking for drama and searching for chaos. I was looking to make trouble but no one was around. Nothing, no one, quiet.

It sounds funny but I really could not concentrate. Perhaps it is because I have so much to do that I can't concentrate for worrying about what is next or maybe I really have lost my ability to work in quiet solitude. Regardless, I found it nearly impossible to concentrate yesterday. Because of it I accomplished almost nothing which is probably the last thing I needed to be doing. I hope today goes a little more smoothly. I was thankful for the opportunity to focus on work. Dear God I was thankful that Sydney was okay, that we weren't fighting disease, that we were all happy and all together. I am still vehemently aware that things could be so much worse. So, I am thankful for what I have. I just don't know what to do with it sometimes.

I follow several other kiddos journeys. I am engaged in these families struggles and, at many times, in complete awe and shock at what they endure. I forget about where we have been and the continued risks the lie before us. Some days it is as if it never happened and it is as though I am watching it all through a looking glass. And just then, I am jolted back into our reality; our past, present, and future as another parents words so eloquently capture the essence of our lives. Today, this parent's words are what are ringing through my ears and tugging at my soul. I know that I could not find any better words.

Most likely this is an inappropriate entry, so I want to apologize ahead of time to my husband, to our immediate and extended families, and to our friends.

But sometimes the rules don't seem to apply or exist anymore.

Maybe this is a cyberspace equivalent to opening the window wide -- very, very wide -- and screaming from the top of my lungs "I'm as mad as
he** and I'm not going to take it anymore." But doing that from the 49th floor is not very safe. Not for anyone I suppose.

Yesterday, Monday: a fairly typical day for her, with the exception of the latter part.

Morning:
- first dose of bactrim, an antibiotic to help prevent pneumonia (pill crushed and mixed into chocolate milk)
- thyroid medication to compensate for thyroid damaged by previous rounds of extensive radiation therapy (pill crushed and mixed with chocolate milk)
- antibiotic to work in conjunction with oral chemotherapy (liquid mixed in with Diet Coke)
- anti-diarrheal medication to counteract side effects of chemo (pill crushed and mixed with something)
- anti-nausea medication for chemotherapy (pill taken with pineapple
juice)
- 3 chemo pills larger than Tylenol caplets to be taken whole. They cannot be crushed, broken or chewed.
- no more eating or drinking because of test later on in the day

Late Morning:
- visit to clinic, physical exam, access to port with needle through chest to draw vials of blood for blood count monitoring. Port flushed and taped up for future access.
- while waiting for results, i.v. placed in hand for injection of dye for brain scan

Early Afternoon:
- switch floors to radiology
- dye injected, head and body mobilized in scanner, and subsequent brain scan; i.v. flushed
- return to clinic; i.v. from hand removed; blood counts are back and far from great
- administration of third chemo through chest port; port flushed and finally de-accessed
- reports of brain scan are back and they're not good either

Late Afternoon:
- on the way home, stop by a toy store while listening to parents'
frenetic but timely cell-phone discussions with doctors about what to do next
- arrive home, some of the toys work; some don't

Early Evening:
- administer oral chemo directly from a syringe into the mouth. The most vial substance known to all of humanity.
- fever spikes to 101.4, accompanied by ear aches

Late Evening:
- ongoing telephone conversations with the doctors as to whether or not we should go to the E.R. and check in. A high fever could mean a possible blood infection through the port, an infection which in her case could be fatal.
- the fever brakes slightly so we decide to stay home
- second daily dose of antibiotic to help prevent pneumonia (pill crushed and mixed in chocolate milk).

Through all of this, where does one put all the anger? Where does one put pain, frustration, confusion, incomprehension, suffering and unfairness? Where does all the sadness go? Where is the strength supposed to come from?

But, most important, through all of this, HOW does one so precious manage to be a "normal" 3 year old kid, to be a teasing big sister to a devilish little brother, or an admiring little sister to the big, big sister? How does she manage to enjoy bubble baths as though she's slicing through a sumptuous chocolate layered cake she's about to devour? How does she continue to laugh so hard that everyone cracks up just from listening to her laughter? Or scream so loud when she can't get the tights on her baby dolls that the cats hide in fear?

That is where the strength MUST come from.

Here I sit on my last diary day before we head back to New York. Yes, on Sunday Sydney and I will be heading back to Sloan for another round of 3F8s. In some ways I am really looking forward to the trip. Although I will really miss Graham, Ainsley, and Lynley I am looking forward to the quality and focused time that I will have with Sydney. Sure it is cancer treatment time but that doesn't mean that Sydney and I can't use this time develop a deeper father daughter bond. I think that is an incredible opportunity. Think about it. How many times, as adults, in our hustle and bustle world, do we get he opportunity to spend two weeks of one on one non- interrupted time with our kids. How many times in life do you get to stop everything else in your life just to focus on the precious life that you are raising. You see, there are hidden treasures in the chaotic world of pediatric cancer. So, how do you see it? Over the next two weeks as you shuffle back and forth to work, as you are absorbed into the daily grind, as your children go back and forth to school I will be lucky enough to be spending one on one time with my daughter. Who is the unlucky one now? Of course, that is also sanity that is talking. I fully realize, however, that those rules may be difficult to apply in the insane world of Dilaudad that we will be stepping into. Hey, you have two ways of looking in and around this world but it is your choice. Is it opportunity or is it just another cancer world beating.

On another note we are still searching for a place to stay. I know that sounds completely ludicrous. It sounds as though we are completely unprepared but we are not. Unfortunately, we probably won't know anything about availability at the Ronald until this afternoon. I have checked with the hotels that are close by and they are either full or they do not offer refunds if we make a reservation. To make a long story short, we are stuck in hotel limbo. Hopefully we will receive a call this afternoon confirming a room but if not - well - we will get on the phone and get to work. In the meantime we will just wait.

I had better be off. It is another work day and there are mountains of work before me. Tomorrow, however, all I have to worry about is my purpose.

Sydney and I are still safely at home. Our flight to LaGuardia was cancelled due to the white out and we have been rescheduled on another flight this morning. Unfortunately, there were no direct flights available so Sydney and I will be flying to New York via Austin, TX and Houston, TX. Instead of flying our normal 3.5 hours we will by flying some 9 hours or so. It will be a long and trying day for us road warriors and I imagine it will be about 8:00PM at best before we arrive at the Ronald.

Well I had best be off. There are last minute items to pack and we have a long day ahead. Hopefully I will be able to find my purpose some distraction.

Good morning New York! We made it! At 9:40 the non-napping, 9 hour traveling, twerp extraordinaire finally closed her eyes and drifted off into sleepy land. I have to be totally honest. She was a great little girl almost the entire day. In fact it was only during the last five minutes of the last leg of the last plane flight that my princess, full of guilty sugary sweets from Mom, made the transformation. She had finally hit her limit and she was both wiped and hyped when she began the barrage of "Are we there yets?" all the time knowing full well that the plane had not landed. In fact, quickly learning that I was not playing along she decided to play along with herself by asking "Are we there yet?" and then answering "no!" to the delight of all the other passengers. It took a minute or two to quiet her down and then she began the "copy cat" game. Yes, she decided to copy everything that I said. "Sydney, stop saying that please." And then she would respond in a whiny voice "Sydney, stop saying that please." Of course, she did not realize that she was merely spawn of the master annoyer and I quickly had her under my spell and cowering to my Bugs Bunny level of wit. No four year old can compete with me. Oh, how proud I am.

Regardless, we made it off the plane unscathed. The airport was packed and it was a pretty high stress environment. Sydney and I, however, were having a blast racing through the crowds. Luckily we did not incite any riots but we had a pretty good time. I could just imagine the look of disapproval on Lynley's face had she witnessed us first hand. It took a while for our bags to arrive and then we were quickly ushered out into the cold where we found a line of nearly 300 people waiting for a cab. Sydney and I opted to get an overpriced ride from one of the limo drivers that was looking for a fare back to Manhattan. It was twice the price but well worth it for the immediate satisfaction and comfy ride in a Mercedes.

We arrived at the Ronald at a little after 8:00PM. Allie, one of our good friends in New York, was nice enough to come over and read to Sydney while I jetted back out to get some groceries, etc. It made life much easier and I was extremely appreciative. We finally made it to sleep at almost 10:00 and my princess seems to be resting comfortably. I will probably let her sleep in as she has an extremely busy day ahead of her. Today will be the first round of treatment for this cycle. I have to run. I have to perform some home toilet repair via instant messenger.

As has become the norm, Sydney had a pretty rough first day back Treatment was fair. Her pain came early at only about 15 minutes into the infusion. We treated the pain with another half dose of Dilaudad but it did not really do the trick. Lynley and I had contemplated giving her another half dose but the monitors really did not support that conclusion. Her heart rate remained around 100. For some reason there was a significant amount of moaning without anything really supporting it on the monitor. I really hate it when Sydney is in that condition because it makes our job as parents that much more difficult. Do we treat the pain and put up with the late side effects or do we work through it? We did eventually give her more pain medication but it really did not seem to offer much of a difference. She would continue to complain of pain for quite a while after treatment.

When we got back to the Ronald Sydney fell asleep and that is how she spent much of her afternoon. She would not wake up until after 4:30. We then went to the toy store around the block and to dinner down the street. About 10 minutes into the meal Sydney started to complain that she did not feel particularly well. We rushed the rest of our Valentine's dinner and made our way back to the room. The next two hours would be filled with nausea and trips to the laundry. Sydney was vomiting in full force and the nature of the beast would not allow her to predict when it would raise its ugly head so I spent a lot of time washing sheets, blankets, and you name it. If it was in four feet of her it was in the blast zone and in dire need of a washing. These episodes went on until about 8:30 PM when finally she fell to sleep.

I woke up many times throughout the night to find Sydney whimpering. I tried to talk to her but she just never really would respond. When I finally decided to really wake her to diagnose the problem it was as if it never happened. She just wanted to go back to sleep. She would continue to whimper, off and on, until well after midnight. So, as you can see, it certainly was not a stellar treatment day. Thankfully we know the routine and I know that I can expect to see some improvement for Sydney today.

All of that seems much too depressing so I have decided to share a funny first day story. I was really paranoid about making Sydney look beautiful. I knew that without her mother there all eyes were on me. I knew Lynley had her spies making sure I was doing my job. She had to be dressed correctly (if not cutely) and perfectly coifed. I was prepared with detangler and comb in hand. I wasn't playing games. I did her hair when we left and, realizing her hat could cause problems, I carried a comb and bottle of detangler in my back pocket. In fact, as soon as we got there I did her hair again. Marie was our nurse for the day. She is one of our usuals. Sydney was glad to see her and gave her a big hug while she was hooking up her noodles. Once again I was prepared with the detangler and comb close by in case any of her hair was distressed by all of the emotion. All of a sudden Sydney looked up at Marie and then looked over at the detangler. Sydney grabbed the detangler and looked straight at Marie. "Marie you should use this, it will make it so your hair is not so crazy and it will help to get the tangles out. You want some?"

See, although some days your purpose may seem awful, single events like this can sustain you forever.

Yesterday was better for Sydney. We arrived at Sloan (detangler in hand) at about 8:00 AM but she would not start until roughly 10:15. The pain from the antibodies was more intense today The first episode came at about the midpoint of treatment (30 minutes in). She complained of "belly owies" but her heart rate wasn't elevated at all. We treated it anyway. Unfortunately it really did not do the trick. Within minutes her heart rate shot up to the 160s and 170s so we gave her another half dose relatively quickly. She would remain in her state of uncomfortable rest for the remainder of the treatment. Usually, at the end of the treatment, Sydney just sleeps it off. She is never really comfortable but the Dilaudad seems to keep her out. Yesterday, however, that was not the case. For some reason, about ten minutes after the infusion she began crying and complaining about pain in her belly. I just assumed that this was another wave of pain that would go by quickly. After all, she was loaded up on pain meds and the treatment was over. I tried to comfort her with cold and hot packs but she would have nothing to do with them. After about ten minutes of this, however, I called one of the nurses in who agreed that we probably needed to treat the pain. Sydney received another half dose of Dilaudad. This one really did the trick. The effect was almost instantaneous. She rolled over and drifted off to sleep. Sydney would sleep the rest of the afternoon away at the day hospital. We left our room at about 3:30 for the play room and we literally closed it down. We arrived safely back at the Ronald at a little before 5:00 PM.

In the evening Sydney complained of nausea but nothing ever erupted from my little puke volcano. She would fall asleep comfortably at about 8:30 and she has rested, moanless and whimperless, throughout the night.

I spent much of my day socializing and talking about my favorite subject - neuroblastoma. I know that sounds strange. Yes, it is engrained in my psyche and it has become part of who I am. I learn something new everyday and it always feels good to share stories and talk to other parents. On occasion I am able to comfort another parent and that is like chicken noodle soup for me - it just warms the whole body and soul. One of the nice treats for me has been the opportunity to talk to David, Emily's dad. Emily is the little girl that I have discussed on an off for the last month or so. She was diagnosed with relapse a little over a month ago and they have been up at Sloan fighting to win the battle all over again. The good news is that she appears to be doing well and the potentially great news is that the type and location of her relapse could be indicative of a good outcome. There is really too much to go into here but I was really pleased to talk about it with her Dad. I don't ordinarily expect good results for kiddos with relapsed neuroblastoma but circumstances surrounding Emily's give me reason for high hopes. I spent the remainder of the afternoon talking to another family as Sydney snoozed away. Talking to others in our situation really comforts me but it always reminds me of how much more needs to be done to save these kiddos. We have to find the silver bullet. There are too many great kiddos at stake.

As anticipated yesterday was much better for Sydney. We arrived at the hospital at about 8:00 AM. Once we settled in Sydney and I ran down stairs to the cafeteria for a little breakfast. I have been concerned that she has not been eating or drinking enough so I have taken every opportunity to fill her up. I gave her the opportunity to choose anything that she would like to eat. She chose bacon, sausage, watermelon, yogurt, Rice Krispies, and oatmeal. I knew that her eating everything that she picked out was an extreme long shot but I was hoping that she might eat at least one of the items she chose. We purchased the goodies and made our way upstairs. As soon as we made it upstairs we were steered back into Yichih's office for a checkup. The impromptu appointment went smoothly. Sydney was tolerating treatment pretty well. She decided to run an electrolyte panel just for good measure. We made it back to our room at the day hospital and began to eat. Well, I began to eat. Sydney wasn't hungry. I enjoyed the bacon and sausage. Sydney sniffed the fruit. I had some cereal. Sydney tasted the oatmeal and spit it back out. The yogurt remained in its container. After about thirty minutes I finally convinced her to eat some dry cereal and have some fruit.

The actual 3F8 treatment went much better and it seemed far more typical She had two half rescues nearly back to back at about the midpoint of treatment. The doses did a fairly good job of pain coverage and she spent the remainder of the treatment in the "zone." Sydney slept off the remainder of the morning and a little of the afternoon. She woke up in a good mood and we made it back to the Ronald at a little after 2:00PM. Sydney and I had a good afternoon and even went for a long walk. We capped off our lazy walk with dinner at the Wicked Wolf where Sydney ate a bowl full of bowtie pasta. Once we arrived back at the Ronald we went to the dining room were we found a do op group entertaining the kids. Sydney had her face painted, listened to the singers, and danced as I chatted with many of the other parents. We finally made our way back up stairs and to the room at about 8:00 PM. Sydney drifted to sleep at about 8:30 PM. All in all it was a pretty enjoyable treatment day.

Sydney and I had a pretty good weekend. Unfortunately it was pretty cold outside so we did not get to venture out too much. Luckily there was plenty of fun to be had around the Ronald. It all started on Friday night with an evening of dancing. Sydney and I went down to the Dining Room where we found "the guitar man" from the park strumming and singing away. Sydney and I danced and had a great time. Later in the evening there was even a birthday party and Sydney indulged in the ice cream cake and a raucous round of pin the spider on Spiderman. That night she made several friends who would turn out to be her playmates all weekend.

On Saturday morning Sydney and I visited with Allie over breakfast. We then set out over the big cold world to do some shopping. After all the big Dudely will be 2 years old the day after we get back home. Note that I said the intention was to get him a birthday present. We went to Barnes and Noble for some books, Best Buy for a new web camera to see mama, and we made it to Toys 'R Us in Times Square to shop for Graham We spent a good 2 and a half hours in the store but all Sydney could find that she thought Graham might like was a complete set of four "My Little Ponies." Now, I pointed out to her that my big manly son would not appreciate those girly toys but Sydney assured me that he would. In the end, I purchased the 4 little ponies and we made our traditional trip across the street to eat at Bubba Gumps. Once seated Sydney suggested that I unwrap the ponies so that she could make sure that they were good. I guess they are kind of like fruit and they might spoil. I know I shouldn't have but I obliged. After all I knew my big hairy son would not want those wimpy little pink and purple herbivorous quadrupeds. After playing with them for a while she spent the remainder of the weekend convincing me that Graham probably would not like them and that she would graciously keep them for herself.

The rest of the weekend would be spent indoors. Luckily, as I mentioned earlier, she had a gaggle of friends to play with which occupied her busy mind, body and soul. It also gave Daddy a nice little break from being the entertainment center du jour.

Yesterday we started out with a bath. I point that out because I want it officially documented for Lynley that not only did I keep her princess duly coifed but I also kept her clean and sparkly. It was a long Monday. We arrived before 8:00 AM but it was well after 11:00 AM before we began. It was a very slow day. The good news was that Sydney's musical playmates had arrived and they would stay their to assist me with pain management. I just can't get past thinking of it as musical voodoo but the fact of the matter is that it works. Sydney was more expressive with her pain yesterday. In other words, she cried out more frequently. However, she was clearly in less pain. Her heart rate spent the majority of its time in the 120s with only a few spikes up to 140. This was 30 beats less than her average for the whole of last week. It certainly seemed that she did not have the usual intensity and she found her comfort spot relatively quickly. I would learn that it was good for Sydney to verbalize her pain (whether talking, screaming, or crying) because it gave her control of the situation. Eventually it would help her to find the zone more quickly. The pain came at about the midpoint of treatment. She would spend the next 10 to 15 minutes trying to get control of it and then spend the remainder of the time dealing with moments of sporadic waves of pain. All in all it was a pretty good treatment day.

Sydney slept off the medications at the day hospital and eventually we made our way back to the Ronald in the late afternoon. She spent the next couple of hours watching television and playing with "Graham's" little ponies. At dinner time we made our way down to the dining room where Dallas BBQ was catering. I waited in the serving line as Sydney stood guard by the elevators hoping to see her friends just as soon as they made it downstairs. Eventually I convinced her to sit down at the table and eat and just as soon as I had done that all of her friends showed up. Sydney ate dinner hurriedly, excused herself from the table, and went to play with the other girls. She would play with Allie and Jenna for the remainder of the evening.

I know Sydney will be sad because today one of her friends will be going in for surgery. This morning Jenna's parents are preparing to take her over to the hospital for some fairly extensive surgery. She has two tumors that will be removed from her head and a special catheter will be placed to deliver medications to the brain. If I understand the term correctly it is called a double craniotomy. I can only imagine the stress and worry that this family might be feeling. Sydney and I will be going through treatment today but you can bet that my thoughts and prayers will also be with them. It will be a long and hard day for this family. Many of us have been in this situation or in a similar one so we know how it feels. Knowing prayers and positive energy are coming in your direction does wonders and is sometimes the only comfort in what will be an extremely trying day.

Sydney had a little more pain yesterday and it was definitely more intense. I am hoping that today we can do a better job at controlling it. I guess there is always something to adjust and once you get all of the drugs set just how you like them everything seems to change. Yesterday was just such one of those days where we never really seemed to get control of the pain. Sydney keeps tricking us. She starts complaining about the pain just as the flush begins (this is the midway point). However, her heart rate and general disposition do not indicate that she is in pain. She generally finds her zone and deals effectively until the next wave hits. All of a sudden however her heart rate will begin to shoot up and by the time we get the drug in we just can't seem to get on top of it and she spends the remainder of the treatment in a fairly miserable state. We have two issues at play here. First, some kids fake the pain a little just to get more "sleepy" medicine. We have heard of kids that have been in a good HAMA (no pain) all week and have faked the pain to get more "sleepy" medicine. Now, I am not saying Sydney is one of these kids but it is one of the things that you have to consider especially in light of the side effects. The second issue is that we try to give Sydney as little pain medication as possible. We fully realize that she endures more pain but the fact of the matter is that by reducing the amount that she is given it actually improves her quality of life while here. I don't think the term "no gain, no pain" is necessarily appropriate here but it is certainly true. By enduring a little more pain in the morning she is given the gift of a pretty normal afternoon and evening and she is not plagued by Cybil, her evil Dilaudad induced twin. I think this decision can be different for every family and for some lucky ones where the Dilaudad has no lingering effects the question is mute. Some prefer to cover the pain as completely as possible even though this often means a complete afternoon and evening in bed. We just believe that a normal afternoon is what Sydney would prefer given the choice.

As you can see I am up a little late this morning. I admit it. I am 35 and I am addicted to American Idol. I am sure that there is an appropriate 12 step program for me. The good news is that I got much of our packing and laundry done last night. Sydney had a pretty good day of treatment. It was fairly typical. There was the requisite about of pain but she seemed to recover fairly well. We were only visited by Cybil for brief periods and other than the fact that she would not take a nap or rest in the afternoon I was pretty impressed. She has rested comfortably throughout the night and I imagine the she will awake raring to go.

Unfortunately, I woke up late this morning and there is much to be done before the princess rises. I had best be off.

Home again! I did not get a chance to write on Friday morning. We were far too busy packing and getting ready to go. Sydney's last two days of treatment went very well. In fact, Friday I found myself in utter disbelief. Sydney made it through treatment with only a half loading dose and no rescue doses of Dilaudad. My original plan was not to skate through Friday's round without any pain medications. I actually felt pretty guilty as if I had unnecessarily put her through unnecessary pain. I knew rationally, however, that I had done everything I could to make her comfortable. It was just one of those strange treatment days. Jacqueline, one of the pain management / music voodoo priestesses, was there to help Sydney through the pain. As usual, I was completely shocked by the power of distraction as a pain management technique. By the time Sydney realized she was having pain the treatment was almost completely over. With a few minutes to go, her heart rate started to climb and when we finally decided to treat Sydney with some pain medication which she angrily refused. In an effort to give her some control over her treatment and her body we honored her wish not to treat the pain. Somewhere she dug deep and within minutes the treatment and our trip to New York were in the history books.

The plane ride home was delayed due to high winds. Although we were anxious to get home we made the best of it. Sydney made a slew of friends as she danced and hopped her way through the terminal. By the time we boarded the plane Sydney was on a first name basis with just about half of the plane. She would sleep most of the way home.

We arrived in DFW about an hour late. Sydney was so incredibly happy to see her mommy. So was I - adult conversation at last.

The remainder of our weekend would be spent in celebration of being home but more importantly, little Dudely's second birthday. Although we kept things fairly low key and relaxed we spent the entire weekend just being a family. I don't know whether Graham ever really realized it was his birthday but I can tell you that he was having one of the best times of his life. He had his Sissy and his Daddy back. Our family was home and together.

Yesterday was almost our first day back in reality. I say "almost" because there were still doctors appointments, etc. to contend with. Sydney's first appointment of the week was with audiology. I admit it I played reverse hooky. After being out of the office for two weeks I knew it was in my best interest to head back into the office. Lynley took the reigns and escorted Sydney to her appointment. From what I understand the appointment went pretty well. They turned up the volume in her kitty ears a hair, made new molds of her ears, and evaluated her hearing. In the end, Sydney's hearing loss has maintained itself. This is good news. In other words, her ears have not continued to deteriorate which could happen for several years after treatment. They did advise us that we needed to start visiting a speech therapist and so we have added a speech therapy appointment to our repertoire. The remainder of the week should be relatively uneventful. We still need to schedule an appointment with Sydney's ENT to have the tubes in her ears replaced, we need to schedule our HAMA draw for next week, we need to schedule a CT scan to take another look at the spot on her lung, we need to meet with her doctors to discuss having her port removed, we have an upcoming appointment with the dentist, and finally, we need to find a speech therapist and set up an appointment. All in a days work, right?

Sydney, Graham, and Ainsley; the twerp squad, are still reeling. They are so happy to be back and torturing each other. Ainsley , of course, receives the brunt of the abuse but she is ultimately the sneakiest. She is now crawling and pulling up on everything. It is amazing how much she has grown in the two short weeks that we were away. She is constantly chasing her brother and sister around and is therefore subject to their bad driving and lack of attention. She is like a ping pong ball between the two of them. It really is like a great episode of the three stooges. Graham will open the door of his car into Ainsley's head which will then fly back onto the ground to be sat on by Sydney. Ainsley's feet will fly up in the air kicking Graham in the "who ha" who will bend over to see what happened and bonk Sydney in the head. And, of course, this all happened in the first five minutes that we had together last night. I hate to call my kids dumb, dumber, and dumberer and thankfully actions speak louder than words so I need not worry about it. Regardless, I am thankful to be back in the chaos that is our normal.

Good morning! It was a somewhat sleepless night around the Dungan household. For some reason, two thirds of our stock decided it would be a good night to wake up every hour on the hour. Ainsley has been pretty much trained to sleep through the night, however, every once in a while she will wake up and demand to be fed. Most of the time we have obliged this urge simply to keep the noise from waking the others. This habit isn't so bad when you have a single child. Waking up occasionally in the middle of the night is something you should expect as a parent. However, when you have three children and you encourage the behavior this only adds up to many sleepless nights. For this reason we decided to correct our "encouraging" behavior and last night we put an end to it. Boy, are we paying the price. Ainsley is stubborn but she is a clever little one. She is easily trainable and I know that with a few more nights of "stick-to-it-tiveness" her sleepless nights will be a thing of the past. Believe it or not, Graham is the major problem. I don't know how we created the monster but I can safely say that I can not remember a time when he slept through the night. In fact, I don't think he ever has. Actually, I know exactly how we created the monster. We never really gave him the opportunity to learn how to calm himself during the night. We always rushed in to calm him because we did not want him waking up everyone else. Unfortunately, it has now grown to truly annoying proportions. Now he wakes up every night and starts screaming at the top of his lungs. Everyone is immediately awoken. Worse yet, Graham will continue to get louder until his needs are met. His needs seem ludicrous. They are usually something like pulling the blanket up over his chest when it is at his waist or pointing out that the pacifier that he is screaming about is, in fact, in his mouth. The point is not what he is crying about. It is about his comfort which is ultimately what the nightly routine is all about. We have never given Graham the tools to calm himself. We created the monster and everyday that we continue to feed it it will continue to grow and get worse. It is time to draw the line.

It will be a sleepless week of purpose but I never forget that this is good sleeplessness.

There were two and a half hours of screaming last night. We are all tired. Need I say more?

Unfortunately, this is going to be another relatively quick update. Yesterday DeeDee fell and broke her wrist. We ran her up to the emergency room and it turns out that she will need to see a specialist to set it. So, to make a long story short, I have been helping her out and, in fact, I stayed the night over at her house last night. She is a pretty tough cookie but you would be surprised how many things require two hands - opening the bottle of Vicodin for one. The pain meds have left her a little light-headed and I have just stayed around in case she needs any help. I am getting ready to run back down to my house (only three blocks away) to raise the rug rats. I can only imagine Lynley had a rough night. Here's hoping I am wrong anyway.

Well there, now that I have given up sleeping I have much more time to write this morning. That is not to say that I will make any sense or that one