1st Annual Neuroblastoma Walk for a cure

Please join us for the 1st Annual Neuroblastoma Walk for a Cure!


1st Annual Neuroblastoma Walk for a Cure
In memory of Michael Mancuso an in honor of Kyla Moore

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Time and Place
Date: Saturday, April 19, 2008
Time: 9:00am - 11:00am
Location: Acme Brick Headquarters
Street: 3101 Bryant Irvin Road South
City/Town: Fort Worth, TX

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Contact Info
Phone: (817)347-7038
Description: 3 mile walk to raise awareness and funds for the new Neuroblastoma Program at Cook Children's Medical Center.

Next Up - scans!

5:41 AM 3/28/2008

We made it through an entire day with no sickies at home. Wow, what an achievement. I am ecstatic to report that, other than Lynley, everyone seems to be back and working as a fine oiled machine. Everyone was back and everyone was good. To be honest, I kind of missed having someone around. Although I worked pretty solidly while she sat and watched movies on the couch it was nice to have the companionship. Okay, I admit it. I am a little lonely.

It has been a pretty busy week. I haven't had a lot of time to update everyone on my conversation with Dr. Eames. We are in the process of rescheduling scans in the next week or two. We are planning a followup MRI, bone scan, and MIBG. Many of you may be wondering why we are repeating the bone scan so soon after the biopsy that we did a few weeks ago. Won't it be worse? Well, sure, but you are thinking of it the wrong way. We are not trying to prove the area is any better. Remember, we still have not done anything to treat it. In fact, we aren't even going to prove that it is any worse in that spot. We know it probably will be. Essentially we are still trying to ensure that it is not neuroblastoma. So, in this case we are using the bones scan to ensure that (whatever it is) it is not spreading to other bones (like neuroblastoma probably would) It does not mean much if the spot is the same or even worse. We are concerned that it is not spreading to other locations.

Next you may be wondering why we are using MIBG. You may say, she isn't MIBG avid in this spot. You already know that Mark. My answer is this. No we don't. The only thing we know is that it did not show up previously. This could be because it was not neuroblastoma, not avid, or not enough disease to be picked up by the scan. With this scan we are assuming that if it is neuroblastoma it has probably grown enough to be detected by MIBG. We are using this scan to rule in disease not to rule it out. I know it seems a little backwards to the normal way of thinking but we have to work within the limitations of the tests. A negative MIBG does not provide us any real value. However, a positive one would tell us for sure. While we obviously don't want to see that result it is the purpose of the MIBG.

Finally, the MRI is to keep tabs on the bone lesion that was detected by MRI. This also probably won't be definitive for or against neuroblastoma but it might gives us an a better indication of exactly what it is. It will also give us some indication of the growth or lack thereof of the abnormal marrow respons. We are monitoring it closely to ensure that it does not get out of control. Until we know what it is you can expect to see a MRI just about every month or so.
Now, on to happy shiny news. I want to thank everyone for all of their emails and comments that they left on the last set of photos. It seems that we have an understanding with each other. There is a bit of misconception, however. I am not a professional photographer. Not even an amateur one. So, don't expect too much. However, I will try to get them closer up in the future. The Easter pics are here: http://flickr.com/photos/62846396@N00/

Happy purpose hunting!

One Huge Leap for Hearing!

Good morning! I am extremely excited this morning. First, I should tell you that Sydney stayed home yesterday. She was iffy to go to school at best. In the end I decided to let her stay home. She spent most of her day on the couch but by evening she was clearly ready to go back to school. Last night she woke about 1:00 AM with a horrible headache. She appears to have slept comfortably for the remainder of the night, however. At this point I am assuming that it was a sinus pressure headache. We shall see what the morning holds.

As you can probably tell, this was not my exciting news. The exciting news for me to share is that the STS study is now available. You may remember me writing an article about 2 months ago on protecting hearing loss from Cisplatin therapy. The article was about a drug called Sodium Thiosulfate or STS which had been shown to protect hearing from the ototoxic effects of Cisplatin. My article goes into far more detail. It can be found here:

http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/archive/2008/01/29/17441.aspx
A short video is available as well.


The important part to note thing to note is that it is now available in study. The Children's Oncology Group (COG), a pediatric cancer research collaborative in conjunction with the National Cancer Institute (NCI), and Adherex Technologies Inc., announced today the activation of a Phase III trial with sodium thiosulfate (STS), a drug being developed to protect against hearing loss caused by cisplatin, a commonly used platinum-based chemotherapy. The goal of this multi-center study, entitled "A Randomized Phase III Study of Sodium Thiosulfate for the Prevention of Cisplatin-Induced Ototoxicity in Children (ACCL0431)," is to evaluate whether STS is an effective and safe means of preventing hearing loss in children receiving cisplatin chemotherapy for newly diagnosed germ cell tumors, hepatoblastoma, medulloblastoma, neuroblastoma or osteoscarcoma. The study is expected to enroll approximately 120 children between 1 and 18 years of age in up to 230 COG institutions located in the United States, Canada, Australia and Europe.

Patients will be randomized to receive either cisplatin alone, a platinum-based drug associated with frequent hearing loss, or cisplatin plus STS. The study will compare the level of hearing loss (ototoxicity) associated with cisplatin alone versus the combination of cisplatin plus STS. Efficacy of STS will be determined through comparison of hearing sensitivity at follow-up relative to baseline measurements using standard audiometric techniques. Hearing loss will be defined using published criteria from the American Speech-Language-Hearing Association (ASHA). It is hypothesized that the proportion of subjects with hearing loss will be reduced by 50 percent (in relative terms) in the STS group as compared to the control (the non-STS group).

This is an enormous coo for parents of children with neuroblastoma. This is a chance to spare your child's hearing. Talk to your oncologist.

Purpose won today.

Couch Recovery and Missed Connections

Good morning! Well, I am happy to report that Sydney appears to be well on the road to recovery. She spent the majority of the day on the couch watching movies. She had sporadic headaches but her temperature seemed to stay under control through out the day. It did not take much effort to keep her resting on the couch. She really did not feel like doing much more.

Lynley went to the doctor yesterday as well. It looks like she has the adenovirus - http://kidshealth.org/parent/infections/lung/adenovirus.html. This describes many of the symptoms that Lynley has and seems to describe Sydney's pretty accurately as well with the exception of the headaches.

I spent most of the day yesterday playing phone tag with Dr. Eames. She has been out on vacation over the last 9 or so days and is finally back in the swing of things. Both Dr. Debbie and I have been updating her on Sydney and she was calling to check on Sydney. Furthermore, she wants me to get her in to see her and she wants to begin the process of getting Sydney rescanned. It looks like we will shoot for the second week of April. I know we will be repeating the MRI but I am not sure what else she has in mind. Truthfully, I would know far more had I not missed every call she made. Regardless, today I am sure that I we will be able to get in touch and that I will be able to establish a clearer picture of what we need to do for Sydney.

Well, I have best be off. I am not sure whether Sydney will be returning to reality today. I had better get to work just in case.

I need to be prepared for my purpose.

It started well enough

Good morning! Well, actually, I change my mind. I am not that chipper. I am going to go ahead and just start this entry with - Morning... It isn't that I don't appreciate you reading my diary. I just don't think the previous start of the morning is really true to my emotions. You see, yesterday did not go as planned. It all started off well enough. I got the kids to school and I had everything orchestrated just right. I made it back to work and I was flying through a huge email in-basket. I even had the opportunity to do some research for a meeting I had at noon on the ral binding protein 1 (RALBP1). I was preparing for a lunch meeting with Dr. Awasthi. You see, he is doing some research on something that I think may be valuable in neuroblastoma. Unfortunately, he is working with adult cancers. I wanted him to expand his horizons and throw some nb cells into the mix to see what happened. I was also looking to gauge his interest on some collaborative projects in the world of pediatrics. The good news is that it looks like he is interested. In fact, I am already working on getting him the cell lines. Now, don't get too excited. This is still very early, however, this is very interesting research and it is aimed towards being a home run. We are not looking for a modest 5 or 10% increase in survival here. We are looking for cure. This is just one of a couple of pieces of research out there that has produced cures for cancer in mice and rats. Now we just have to prove that it does not kill humans. Unfortunately, that is a common byproduct of many of these really incredibly agents. Regardless, it is worth a shot and I believe that it is something that could work in neuroblastoma so I asked if he would consider running it against some cell lines. He agreed. Cell lines are on their way. We will see what happens. It is interesting stuff. See, my transformation into a nerd is almost fully complete.
So, anyway, here I was having a great day. And then, the school called Lynley. Sydney had a tremendous headache, a tummy ache, and a low grade temp. We were both in the meeting so we asked them to dose her with Tylenol to see if we could get it under control. Within 45 minutes her temperature was steadily rising - 101.2, then 102.3. I raced to pick her up. Sydney did not look good. She was clearly sick and disoriented from the pain in her head. Dr. Debbie made a slot for her and we headed over to the pediatrician's office to wait. We would have to wait about an hour due to her patient load but it was worth the wait in the waiting room. Had we gone home we would have had to turn around just as soon as we got there. For the most part she slept on my lap. Eventually (and actually before our appointment time) we made it back to the treatment rooms. Her temp was now well over 103. They tested Sydney for strep and the flu, both of which she passed with flying colors. Next was a urine test to rule out a bladder infection. This turned out to be a little messy. Let's just say that I have not mastered holding the cup for a delirious 6 year old to pee in. Speaking of which, I really don't have any desire to wear the shirt I was wearing yesterday afternoon anymore. Regardless, the results are pending but we decided to go ahead and treat her with Bactrim for the likely bladder infection anyway. We also gave her some ibuprofen. She was still disoriented so I let her sleep in the treatment room until I was sure the ibuprofen would stay down. Eventually we would leave and make our way back home.

At home Sydney would spend most of her time on the couch. At about 4:30 she would begin throwing up every 15 or 20 minutes for the next hour or so. I had some extra Zofran so I threw that into the mix. That seemed to do the trick. She would fall asleep and rest comfortably for the rest of the night. I don't know what we will find this morning but I am happy to see her at least resting comfortably.

See I told you the day did not turn out as wonderful as it began. It is okay I suppose.

I have got my purpose.

Dad's Day - A Surprising Trip to the Gardens

What an utterly awesome long weekend. We truly had a wonderful time. It all started on Friday. As planned, I began with a little breakfast picnic. Now, if you are expecting a picnic basket filled with goodies that I slaved over in the kitchen then you would be expecting far too much. You have way overestimated me. However, if you were expecting a paper bag stuffed with taquitos from Whataburger, 3 small orange juices, and one very large coffee then you might know me a little better. Regardless, a surprisingly quick drive through experience at the old fast food restaurant and we were cooking with grease. Our day began at the botanical gardens. Here is a shot of breakfast.

As you can see, it was a pretty nice little excursion. You may wonder where I sat. Unfortunately, I was relegated to the adult table. It was a bit cold out but we were having enough fun that we decided to spend the rest of the day here. There was an emergency poo situation that required a quick trip back home where we performed some serious cleaning and a bath. Don't ask. Anyway we decided to pick up DeeDee and take her out on our next adventure to the Fort Worth Botanical Gardens. We spent the rest of the morning traipsing through the rose garden, the gated garden, and the Japanese garden. We had a blast and it was a pretty good decision too. Watching the news later that evening we would find out that the zoo hit a record high attendance with over 17,000 people. The traffic was backed up for miles.

Now, just so you know. I did keep to my word and I kept a little photo journal of our little excursion. I will share it with you. But first, I want you to know that taking pictures is not my strong suit. In fact, you may notice that I have never been in charge of taking or putting up photos on the website. I write in the diary. I just work here. However, if you would like to see more pictures of the kiddos and our adventures (which I know many have been asking for) then you have to let us know. It is simple. If you want me to take more pictures, then you have to leave comments on the pictures that I take. It is a two way street. It is simple, I don't want to take the time to post the pictures of the kiddos if no one is going to share them and enjoy them with me. So, bottom-line, if you want me to continue to take pictures and post them on the web them you have to leave some comments on the pictures. Look at it this way, the kid's will love to hear what everybody says about their pictures. We will be able to share this experience together and it will be a keepsake of their memories and your comments forever. So, there you have it. We have a deal. I post the pictures, you leave a comment on them. I have posted my first photo journal on Flickr. You can leave a comment on any picture that you like. You will notice a small comments link under each picture. Our new photo journal can be found here:
http://www.flickr.com/photos/62846396@N00/

Have fun! We sure did.

See, now we all have another purpose.

Capturing Chaos

Good morning! Well, I still don't have any news on the FISHing report but, on the other hand, I am feeling better about it today. Another family that went through a similar situation a few years ago wrote in the guestbook and assured me that it took awhile to get some answers. They also confirmed my original feeling that the waiting was excruciating. That made me feel better. Strange, but it is sometimes nice to hear that you aren't the only ones to ever have had to suffer through the wait. Thanks Vickie!

Today will be a special day. I have all 3 kiddos to my little lonesome today. The mean state of Texas has required that my wife work on Good Friday while they have let my twerplets out of school. I will be terribly outnumbered with no one to run cover for me. However, after almost 7 years of parenthood I am completely certified to handle them on my own. It is just much more fun with my wife. Regardless, my mind is reeling with ideas on what we can do. I was thinking of a breakfast picnic at the botanical gardens, followed my a run through the trees and then, perhaps, a trip to the Zoo. I have a few other options as well but this will keep us close to home and to Lynley. I have a sneaking suspicion that the Governor will let them go by about noon. This way she can join us easily.

Today I will be taking the camera. I am working on a new Dungan Family website (yes, I know, only about 5 years over due) and I want lots of shots of the kiddos. Last weeks photo shoot with Geno Loro (http://www.genoloro.com/) has made me fall in love with photography and the different emotions that can be captured. He did such tremendous work that he has left me desperate to try to capture some of those feelings on my very own. Of course, I have no experience, no talent, and no worthwhile camera but, has anything like that ever kept me from trying, heck no. To me it is kind of like trying to learn about neuroblastoma. I will just keep beating myself across the head until it sinks in. Eventually, I will get a good picture. As you can see from the picture below of Sydney that was taken by Geno Loro, I have a long way to go.

Now that is purpose!!

5:10 AM 3/20/2008

5:10 AM 3/20/2008
Still no new news on our little neuroblastoma FISHing expedition. Frankly, I am starting to get a little nervous now. I had been under the impression that we would hear something on Monday and here it is Thursday with no new news. I finally broke down and emailed Dr. Russell yesterday afternoon to see if she had heard anything. You may think that I would have mentioned it in passing during all of my conversations with her this week, but I just did not feel comfortable with it. I genuinely try to keep my CNCF business life separate from my Sydney paranoia life. So, regardless, I hope to hear back today and, for God's sake, I pray that it is clear.
I still have not made much sense of the spot in her arm. In fact, if I had to be honest, after Dr. Russell's presentation on bone metastases I would have to believe even more strongly in the possibility of this still being neuroblastoma. I know, I know we just found that the biopsy did not show neuroblastoma. Well, my answer to that is that we knew going in that the likelihood of finding neuroblastoma was probably pretty low. We do have fairly high confidence that they hit the right area on the biopsy but there are no guarantees. I know I sound like a broken record but there is still something in her arm and nobody has given me a reasonable possible diagnosis that is not cancer or neuroblastoma, specifically. All I continue to hear is "normal kids don't get bone scans and MRIs so this could be just a normal process. We just don't know." That is all fine and dandy but when you have an orthopedic oncologist screaming that it is cancer that argument just doesn't hold much water.
By the way, for those of you that missed the seminar on Neuroblastoma Bone (and Bone Marrow) Metastases the other day, a video of the presentation can be found here:
http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/archive/2008/03/19/21615.aspx
So, in a nutshell, that is why I remain nervous. I am anxiously awaiting this last result so that we can begin again the process of developing a plan. Right now, I don't have one. We need to get the result so we can move forward and make some more decisions about how we are going to proceed. If the consensus is to wait - fine! I just need to know what to do.
Purpose and paranoia - they can make strange bedfellows.

5:10 AM 3/20/2008

Still no new news on our little neuroblastoma FISHing expedition. Frankly, I am starting to get a little nervous now. I had been under the impression that we would hear something on Monday and here it is Thursday with no new news. I finally broke down and emailed Dr. Russell yesterday afternoon to see if she had heard anything. You may think that I would have mentioned it in passing during all of my conversations with her this week, but I just did not feel comfortable with it. I genuinely try to keep my CNCF business life separate from my Sydney paranoia life. So, regardless, I hope to hear back today and, for God's sake, I pray that it is clear.
I still have not made much sense of the spot in her arm. In fact, if I had to be honest, after Dr. Russell's presentation on bone metastases I would have to believe even more strongly in the possibility of this still being neuroblastoma. I know, I know we just found that the biopsy did not show neuroblastoma. Well, my answer to that is that we knew going in that the likelihood of finding neuroblastoma was probably pretty low. We do have fairly high confidence that they hit the right area on the biopsy but there are no guarantees. I know I sound like a broken record but there is still something in her arm and nobody has given me a reasonable possible diagnosis that is not cancer or neuroblastoma, specifically. All I continue to hear is "normal kids don't get bone scans and MRIs so this could be just a normal process. We just don't know." That is all fine and dandy but when you have an orthopedic oncologist screaming that it is cancer that argument just doesn't hold much water.
By the way, for those of you that missed the seminar on Neuroblastoma Bone (and Bone Marrow) Metastases the other day, a video of the presentation can be found here:
http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/archive/2008/03/19/21615.aspx
So, in a nutshell, that is why I remain nervous. I am anxiously awaiting this last result so that we can begin again the process of developing a plan. Right now, I don't have one. We need to get the result so we can move forward and make some more decisions about how we are going to proceed. If the consensus is to wait - fine! I just need to know what to do.
Purpose and paranoia - they can make strange bedfellows.

5:42 AM 3/19/2008

Good morning! There isn't much to report on the kiddo front. Dr. Russell unfortunately did not offer any reports on Sydney's FISHing expedition. The training session on neuroblastoma bone metastasis did, however, go very well. Being the first time, with a brand new technology, and our first attempt at an online seminar I think it went very well. Oh sure, there were some technical glitches but it went really well. So far, the feedback that we received back was great. Now I just have to figure out what the next topic should be.
Yesterday was quite a rainy day. This left all of the twerplets a little stir crazy. When Lynley got home she rescued one of them from the insanity and took him to the store for some new shoes. As many of you know my son Graham has some issues. He is anal with a capital Daddy (I meant to say A) Of all of my children he continues to be the most sensitive soul. This "sensitivity" raised its head once again as they tried on shoes.
You see, it all began the day before. Lynley had the day off from work and decided to buy the boy some new super go fasties (shoes). She purchased Graham some handsome new tennis shoes. When Graham came home he absolutely fell in love with them. In fact, he carried them around all night and even slept with the shoe box. In the morning he tried them on. They were clearly too small and Lynley told him we would have to take them back to the store. Graham insisted that they fit just fine. His heart was broken. This sent his psyche into overload and he had a mental breakdown.
This was the reason they were back at the store. They needed to fit Graham properly so that we could restore his gentle mental state. The footometer had him measured at an 11. This is what Lynley had brought home the day before. They decided to start him with a 12. There has a good half an inch between his heel and the back of the shoe. They were clearly gi-normous. Graham, however, felt that they were down right perfect. Again, we had to pry him out of the shoes and try on a smaller size. The next size down was an 11.5. From all practical appearances these seemed to fit the bill. They were just big enough to give him some room to grow but not too big that he looked like he was speed skating when he walked. Lynley asked him to walk a few steps. He refused and very sweetly started balling. He demanded that the shoes were too small. Mind you, it was clear that they were not. He demanded that they did not feel right and, once again, his gentle psyche was in turmoil. Lynley bought the shoes and came back home. By the time they arrived home Graham had forgotten that he thought the shoes did not fit and spent the rest of the evening running around in his newly found love.
I did not get to put him to sleep last night as I had a CNCF board meeting but I am pretty sure that he tried to sleep in them. In the end a great tragedy was averted.
Sometimes I am amazed at how similar my purpii are to me.

5:04 AM 3/18/2008

Good morning! I know, I played hooky yesterday. To make a long story short, I woke up with an excruciating headache yesterday morning and hid in the dark until about 6:30 AM before I became even remotely functional. I was incapable of walking into the bathroom, much less thinking about what I should write in the diary. By the time I had semi-recovered the kiddos were stirring and, low and behold, a new day had dawned.
It has been a busy couple of days. It all started on Friday with a photo shoot. The CNCF had its final day of shooting for its neuroblastoma awareness campaign and collection. Over the two day shoot Geno took some of the best pictures I have ever seen. To say that they are incredible is an understatement. The shoots themselves were quite fun. The kids had a lot of fun and we did as well. I am biased but I have to be honest, kids with neuroblastoma are just down right adorable. There wasn't an ugly one in the bunch.
As you would come to expect on any photo shoot with that many kids with cancer there was also high drama. Lukas, one of our youngest models, ended up in a surprise 10 hour surgery and Ayla, another one of our fellow neuroblastoma survivors, ended up in the ICU and was never able to even make the shoot (for obvious reasons). In fact, I spent as much time up at the hospital with the families on Friday as I did at the shoot. Over the last few days many have asked how the both of them are doing. Although I have been by several times I have not been able to see them. Both are in the ICU and I figure that if I don't see them out and about then they probably don't need to see me. So, in short, other than to here that they were probably going to be moving Lukas from ICU soon, that is about all I know.
The weekend was splendidly average and normal. In fact, we did absolutely nothing out of the norm. It was perfect. The urchins spent their time in the trees and rummaging around the backyard. Lynley did chores and I (very wisely) did exactly what I was told. Complete bliss.
Yesterday was time to play catch up on about 10 projects that I have up in the air. It was a busy day but nothing to write home about. I am happy to say that my headache did finally subside. The kids were all late starters. Getting back into the swing of things after spending a week on spring break is always a little tough. I am happy to report that the kids all made it back to school and to reality without incident. As is usual, Sydney and I came home from speech therapy to find the rugrats perched in the tree. For the next hour they hung in the tree as my wife and I chatted up the day and prepared for dinner. All in all, it was a pretty good day. I will certainly take it.
Today will be another busy day. At noon we will be having CNCF's online seminar on bone metastasis which will be the first of what I will hope will be an entire educational series for families. Dr. Heidi Russell will be providing an hour long presentation on the subject for everyone who wants to attend. It will be valuable information for anyone that wants to know how neuroblastoma metastasizes to the bone and how it is treated. More information on how to participate can be found here: https://www2.gotomeeting.com/register/402147690
That is about all I have time to report. As you can see things are truly and completely, well, swell. We are still waiting on the final results on Sydney's marrows. The last test that they were going to do was a fluorescence in situ hybridization (FISH) for NMYC - think of it as "FISH"ing for NMYC. Oh, that was bad. I have become way too nerdy with this stuff. Anyway, this is another very sensitive way to test for the presence of neuroblastoma. I imagine that Dr. Russell will hear something today. Isn't that convenient? This will be our last opportunity to discover neuroblastoma at this point - not that I want to.
Purpose is chugging along at a fast clip.

6:13 AM 3/14/2008

Need I say more?

1:53 PM 3/13/2008

Negative! Can you believe it? I guess I can a little bit. We knew going into this that an inconclusive result was possible. We even expected for the sample to be tainted. What I am ecstatic to report was that it was neither. The marrow and the 5 samples of bone were all perfectly healthy and normal. I guess that they could have missed the spot on the bone scan but, the MRI showed such a diffuse pattern on we would have had to assume that we would have at least picked up an inkling of abnormality. I am amazed and incredibly happy. We don't really know where to go from here. I am sure there will be further discussions but, for the time being, we can all breath. This afternoon we get to play out in the yard. We have been given an incredible gift of time.

My purpose shines.

5:27 AM 3/13/2008

Good morning. Well, today should be the day. If I am being honest, I have really been dreading today. For me, this week has been all about preparing for today. I have been focusing on making sure Sydney has taken advantage of every moment. What I have come to find is that the last few days have been entirely normal and average. In the afternoons, we have arrived home and headed outside into the backyard. There the little tree huggers head for their little home away from home high above the ground. There they played and delighted. Eventually they would make there way through all of their favorite spots - the fence, the tree, the play house, and the trampoline - all above ground. After we all have had enough fun we would scramble to get dinner finished which was always late due to the fact that we had forgotten about it in all the fun. At dinner their were giggles and laughter. Normalcy of course also required a few tears as tweedledom and tweedledee fought to avoid the vegetables on their plate. After cleanup we made our way upstairs for baths, jammies, and snuggles and we watched a movie - this weeks feature has been Mr. Magorium's Wonder Emporium.

I guess the real point that I am making is that we have spent our time doing what we would do on any average day. I find this incredible and it leaves a warm place in my heart. The fact is that we don't know what our future will hold. For this reason, we wanted to have our children experience some incredible times before we faced the unknown. The best thing we could think of, the thing that we thought we would all love the most, is what we already had. If you ask me, that is a pretty great life. If we could have anything in the world, we would have what we already have. That tells me that we have learned something very important from this journey. For that, I am thankful. Although the concerts, trips, and amusement parks are all very nice; I think we would all prefer to just spend an afternoon together out in the backyard. We are lucky.
For what the rest of today holds I am not so thankful. I don't want to sound all gloomy and doomy. Perhaps I am just trying to protect myself from being devastated but I think Lynley and I have both prepared ourselves as much as one can. I think this is one of the reasons that although we wanted to know the answers we have been content to wait as long as Sydney was healthy and not at risk. To this day, I still have not found or heard a differential diagnosis that has really made me feel much better. I think that has been the damper for me. I honestly don't know what to hope for. Sure I want it to be benign but I just don't know what it could be. Yes, this is the source of my dread. I am hopeful and I am praying. I just haven't found a tangible real answer to alleviate my worst fears. It is a powerless position and perhaps that is why I have focused on my family and our normalcy instead of would would ordinarily be an incapacitating fear.

In the end, this evening we should know something. Although there are no guarantees, the team in Houston certainly felt confidence that they would know something. Have all of our trials and tribulations been because of relapse? Have we been fighting off what we know is probably the inevitable with relapsed neuroblastoma or are we going to be able to celebrate the fact that it was probably never anything at all. Will this tell us anything about our past? Did she relapse in October of 2004? Will she be able to live her life or will she be faced with the same unknown future? Will she play outside or watch it from the window? Today is so full of unfair questions for Sydney. No one's life should come down to this. And yet, the next two years of hers certainly does. Is this the beginning of her life? Is this freedom? Or is it going to be placed on hold again indefinitely?

So much hangs on a single phone call this afternoon. How I would love to let us just play outside in the back yard worry free. I want to give her that again.

Purpose - Prayer - Hope.

5:11 AM 3/12/2008

Good morning! Well you certainly would not have been able to tell that Sydney had a biopsy on her right arm yesterday morning. Today she was up to all of her usual antics. There was nothing to slow her down. This week is Spring Break for the kiddos at Southwest Christian School. Mimi has come in to visit and to spend some time with Sydney during the week. This gives Lynley and I a bit of a chance to catch up on work. With all of the scans and procedures as of late both she and I have spent the majority of our time outside of the office. Neither of us really thought it would be appropriate to take an entire week off to watch Sydney - not that we would not want to. Regardless, Sydney spent a wonderful morning running errands and playing with Mimi and DeeDee and then spent much of the afternoon watching the construction workers over the fence. They are in the process of renovating the house next store (this is month 9) and watching them is one of the kiddo's favorite past times. I often found her scaling the fence and climbing trees. If her arm was bothering her, she certainly did not let it slow her down.

Thankfully this week is a tremendously busy week. Although I am constantly thinking about Sydney's biopsy results, the hectic schedule keeps me from being able to wallow in worry for too long. Today we will be having the first of two days of a photo shoot for the CNCF. I don't know that I have mentioned it before but the CNCF is working on a national neuroblastoma awareness and educational campaign. It will include video, audio and print elements and should run pretty much throughout the country. The theme of our campaign and our message is heavily dependent upon the imagery. The photography is a major element to our success in getting our point across. Geno Loro, a well known photographer, has agreed to help us out free of charge and he has donated two days to photograph families. We have about 10 families that have been touched by neuroblastoma and are willing to be part of our message. Over the next couple of days we will be photographing them all over the place. It will be good to keep my mind busy and it is quite obviously for a good cause.

As you can probably tell this is a very strange place for me. It is quite like walking in a fog. Outside of our trip to Houston and some scans this has been such a completely normal time for us. Sure we have been worried about what Sydney's future will hold but it has been so nice to just be a normal family. We have done all kinds of normal activities and have just tried to enjoy the norm. The fact is that we know that, come tomorrow ,the fog will lift. We will most likely be able to see what is on the other side. When we glance past the haze will we see horror? Will we be thrust back into the roller coaster world of cancer? Will it be neuroblastoma? Will it be something worse? Could our prayers be answered and could it be something benign? I am still looking for that nice sweet differential diagnosis that says it could be something sweet and innocent but I am yet to find it. The fact is, the haze is getting ready to lift and fear is rolling in its place. Tomorrow afternoon we should have an answer. Please don't let it be neuroblastoma.

Spare my purpose.

6:10 AM 3/11/2008

Good morning! Well we have safely arrived at home sweet home. We did not leave for our trip back to Fort Worth until late afternoon. There were some issues with Sydney coming off of the sedation. I think Lynley and I both blame ourselves for letting it happen. It was certainly no fault of anyone else. Sydney is just a nutcase on narcotics. We probably should have known she would go off the deep end with any more. However, she was older now and we figured that it must certainly be related to age. She had surely outgrown the Cybil.

We were wrong and it was less about age and much more about the narcotics. This is how it all happened. She came out of the initial sedation beautifully. She was happy, cheerful, and sweet. In fact, she was already getting ready for lunch. All of a sudden she began having some waves of pain. Never having had a bone biopsy in our forearm we really had no concept of the level of pain she was in. She was being fairly dramatic and pointing to her wrist. The doctor came in to take a look at her. It made sense. The area that she was complaining about was where the muscle that they had gone through attached to the wrist. Her pain score was pretty high and we elected to give her some more Fentanyl. The pain subsided. But, all of a sudden, Cybil came out. It was like a switch immediately flipped. Apparently this was just enough to tip her over the mental edge and she went into an hour long mental funk. It was full of crying, screaming, and flapping around on the bed. There was no consoling her. In fact, there was no way of reaching her. No one was home. There was no reason in her eyes. Simply put, she was mad.

We had seen this reaction before. Way back in the recesses of our minds we remembered her difficulties with Nembutal. That drug was part of this sedation mix. In fact it was in a group of drugs that I call the "Cybil nutsoids", a whole group of drugs that send her to the flip side. Versed and Nembutal are the big ones and I think the Fentanyl was just one more feeling that was the sprinkle on top that sent her over the edge. Regardless, we were all in agreement to withhold any further drugs and she eventually came out of it. I must say that the team at Texas Children's really felt for us. We had prepared them in the beginning. We had gone down expecting anesthesia and when she received sedation we made it very clear that this was her history. I think we had all assumed that it had been a while and that she had possibly outgrown it. We were all wrong. Sydney's brain and that grouping of those classes of drugs are a big no-no for Sydney. We won't forget in the future.

We finally made our way out the door and back into the car at about 3:00 PM. We were home by 7:45 PM. In the end, it was a long day. We made a bad judgment call but it did eventually turn out to be okay. We won't make assumptions next time.

Purpose can catch you by surprise even when you think you know better.

10:19 AM 3/10/2008

Sydney safely made it through the procedure. At 10 AM the doctor came out to the waiting room and let us know that she was able to successfully obtain 5 slivers of bone from the biopsy area. According to her this should be sufficient for diagnosis. Sydney will be in recovery for 3 to 4 hours and then hopefully we will be back on our way home to Fort Worth.

Now we wait....

Purposefully!

6:26 AM 3/10/2008

Good morning! I have just a few minutes but I wanted to give everyone and update. Well, we snuck down a day early. On Saturday evening Lynley received a call from one of her friends who happened to have tickets to the Hanna Montana concert. Although this is the last thing Lynley and I wanted to attend we figured someone else just might like it. I don't know what the odds are of having a friend in Fort Worth who had tickets (and good ones) to a sold out concert in Houston, but we sure hit those odds. Regardless, we hopped into the car and made our way down to Houston just in time to attend the teenage girl frenzy on Sunday afternoon. Sydney had a blast. She even suckered me into buying her a purple wig which she wore for the remainder of the night. All in all it was a successful trip down.

This morning we are due at the hospital at 8:00 AM. Sydney is still curled up on her pillow fast asleep and Lynley is busily adding to her beauty in the bathroom. I imagine things will start to get going in full force pretty soon. I am not sure when she is scheduled under the knife but I am assuming it is somewhere near 10:00 AM gauging from times that they have restricted her diet. If all goes well we should be back on the road by early afternoon.

Today I am hoping for a smooth procedure and that they are able to sample the bone without causing fracture or too much damage. I am praying for a good sample and most of all that it is not neuroblastoma or something even worse. I am going for something benign. If you get a chance this morning send some positive thoughts in the direction of one otherwise perfectly normal, happy, and healthy little girl.

Today my purpose is focused.

6:18 AM 3/7/2008

Good Morning! I am having a little bit of a late start this morning. I woke up about 3:00 AM and forced myself to go back to sleep. The next thing I knew it was about 5:30 AM. The good news is that I did not have anything really critical waiting for me this morning. I had spent the late evening hours with my nose in the laptop studying various bone tumors. It did not raise my confidence level. Bone tumors are about as much fun as neuroblastoma. I was not delighted.

On the other hand, we had snow yesterday. It was quite wonderful for the kids and a really sharp contrast from the day before. I could not resist taking another picture. Can you believe this was only taken one day later?

I am pretty sure that this is pretty much the Mecca of kiddo-dom. I can't recall another episode of such giggly exhilaration in our recent history.
Well, here we are on Friday. Late Sunday evening or early Monday morning we will make our way to Houston for Sydney's biopsy of the spot on her arm. We are due at 8:30 and I imagine that we could be finished as early as noon. I have not received all of the details but from what I understand she should be able to walk out of there with as little as three Band-Aids on her arm. That is certainly what we are hoping for. To remind everyone, this procedure is far less invasive than the other way that they were going to go. We will be biopsying the spot on the bone scan which is slightly different than the spot found on the MRI. This is a slightly easier area to hit safely and we will not be putting her at nearly the same risks that we were with the open biopsy. Additionally, we will be sparing the spot on the MRI. If we ever need to go in later to biopsy that spot, it won't be damaged. Many have asked why we are not biopsying the spot on the MRI. Wouldn't that be the most likely spot to find tumor. Well, yes and no. The area on the bone scan is much larger so, in that sense, it is much easier to hit. Also, if it is disease we should still be able to get an adequate sample. They will be sampling three places with a radiology guided needle. We are of course praying for her safety and that they don't nick any vessels or nerves. To be honest, even after studying various bone tumors, I really don't know what to pray for. Let's just hope that it is something benign - something recoverable. There is still a chance that this could be nothing too serious. Truth be known, however, it is a long shot. Let's just pray for the best for Sydney.

I hope to write on Monday morning but as you may guess it could be difficult. I will keep everyone informed as time permits.

My purpii sure look happy up there, don't they?

5:20 AM 3/6/2008

Wow! I have so much that I could write about today. I guess I should probably start with the kiddos. They are doing wonderfully. From the standpoint of kiddo-dom I really could not be happier. Each is doing well at school and they all seem to be getting along really well together.

The weather has been relatively nice the last couple of days and they have remained glued to the outside. It also seems that they have developed some allergy to the ground. Rarely, if ever, will you see them on the ground. They are often found in the trees, scaling the fences around the yard, trying to sneak onto the neighbor's roof (yes, you read that correctly), playing upstairs in the playhouse, or jumping on the trampoline. Ainsley is the most shocking who at two can climb, scale, sneak, and jump with the best of them. They make up great games and have just a wonderful time together. Yesterday I snuck up on them to take a picture while they were playing ring-around-the-rosy on the trampoline. It isn't that great of a picture but it gives you some idea of how close they are. Also, note Sydney's hair. It is so fine that the static electricity from the kids socks on the trampoline makes her hair stand on end. You can't see the top well but I can assure you she is well framed in a halo of hair.

Like I said, it really isn't that great of a picture but the fact that they play together like this just makes my heart so warm. Think of it as my feel good picture of the day.

My mind is still reeling from the NANT meeting last week. You may remember from a year ago that I made a presentation to the NANT. I outlined several areas of concern from the perspective of parents and then lined out 9 suggestions of ways to address these perceptions. One of my suggestions was the creation of a NANT Advisory Council that was formed by those most effected by neuroblastoma and relapsed and refractory disease. I am happy to announce that they officially endorsed the group and have made huge strides to communicate and to meet the challenges we offered. In fact, they have done so much I even had to sign a confidentiality agreement regarding the meetings. For that reason I can't go into many specifics. Short of a cure, I could not have been happier. There are many new drugs in the pipeline and there are several new combinations becoming available. In fact there is only one new single agent trial that has been added and that was a drug that had produced complete remissions in adults. All of the other trials are multi-agent trials and they have continued with a meaningful effort towards creating a chemotherapy backbone suitable for treating kids with disease. They are clearly making every effort to make the current trials as efficacious as possible for our kids.

There are often two misconceptions regarding the NANT, both of which stem primarily from the emotion of having your child's life on the line. First is the realization of the incredible amount of work that the NANT puts into preclinical research. The second is that they don't move fast enough for our children. Many parents and families are frustrated by the pace of the NANT because they spend so much time studying drugs before they actually put them into kids. They have tremendously rigorous standards that drugs are held up to before they are even considered to go into kids. Many people have assumed that they are just enamored by the science - that they don't care about the kids. They have assumed that the researchers really only care about the science and not speeding the cure for the kids who are here now. Truth be known, it could not be further from the truth. The NANT has made a huge commitment to speed up research. In fact this is the standard that they hold up nearly every decision to. I.e. Is the fastest way we can possibly answer this research question? To do that they have decided to hold all treatments to as high standards as they possibly could before allowing the treatments into kids. They did this because of experience. They have all been frustrated by the amount of treatments that have gone into kids and have ultimately failed. Not only is this a waste of financial resources but it is also an incredible waste of time. It takes so much time (years) and money to put drugs through phase 1 and phase 2 trials that they have committed to only put the drugs with the absolute most potential through. They don't want to waste their time on the "maybes" They want to be as sure as they possibly can be before putting agents through trial. Furthermore, the more trials that are available the longer it takes for each one, individually, to close. There has to be a balance. It is for these reasons that they hold drugs to such rigorous standards and ultimately why the process seems so slow.

In short, I was very pleased at the NANT meeting. Unfortunately, I did not see the cure to neuroblastoma but I did come away with far deeper understanding of the problems we face. I also saw some very promising treatments in the NANT and there are much more on the horizon. There is hope and there are many very dedicated people fighting to find a cure as quickly as they possibly can.

There are many that share our purpose.

6:35 AM 3/5/2008

Good morning! I have had a bit of a late start this morning. I guess all of the traveling has finally caught up with me. By now you can probably tell that Sydney is not having the biopsy procedure today. As it turns out, yesterday, I drove to 4 hours to Houston, made the check presentation and then drove back home - all before about 3:00 PM in the afternoon. My trip to Houston actually went very well. There I was met by several others who had worked so hard to raise money for this new clinical trial. Some of the money came from the golf tournament that we had in Las Vegas but the majority came from the Lunch for Life campaigns of two families. In total, the Scaznys, Weberlings, and the Edgingtons helped raise $66,000.00 for this trial. The new induction trial aims at increasing the efficacy while reducing the toxicity of upfront therapy.

Sydney's procedure has been rescheduled for next Monday. This will be much easier on our family. This Sunday afternoon we will head down to Houston. On Monday morning we will meet with the interventional radiologist at 9:00 AM and then the procedure should follow shortly thereafter. We should be back on the road and on our way home by about noon. We probably won't know anything until late Thursday afternoon.

In the meantime their is plenty of normalcy going on. Well, I had better run. I am late and I am way behind.

A busy day of purpose lies ahead.

5:34 AM 3/3/2008

5:34 AM 3/3/2008

Good morning! It feels like it has been weeks since I last wrote in the diary. A tremendous amount certainly has transpired in the short time since I last scribbled my thoughts. I will have to cover much of this over a period of several days. First, I should tell you that my trip to the NANT was wonderful. As always, it was jam packed with information and research. I also had the opportunity to meet with many of the investigators first hand. I was extremely pleased with what I heard but I will go into more detail as the days go on. Although I tried to avoid the conversation during the consortium meeting, there was also much that transpired regarding Sydney. Quite frankly, I did not really think this was a proper venue to discuss her treatment. None the less, I was pulled aside on several occasions to discuss her care. I genuinely appreciated their compassion and interest.

In the time that transpired since last Thursday we have continued to hear good news (if not more confounding news) regarding Sydney. At this point most of the tests have been run and Sydney has continued to be negative at everyplace her marrows have been tested. This is great news. It is not proof that she has not relapsed but a very good indication that we are not currently dealing with widespread disease. I received several reports throughout my time at the NANT of her marrows continuing to be negative. There are two labs that are doing some specialized testing that is beyond the scope of what I have previously mentioned. I do not expect them to necessarily find anything and I honestly don't know if anyone would consider acting on those results if they came back positive anyway. In these cases we are operating on the very edge of science and we honestly do not necessarily know what the results would mean anyway. However, another negative result would be just that much more assurance that we are not dealing with disease.

So, what does all of this negativity mean in the big scope of things? While I am tremendously excited about it from the standpoint of continued evidence that it might not be neuroblastoma, the fact is that there is still something in her arm. This isn't fluke. This isn't some natural process that just got picked up. There is something growing in her arm. People are asking questions about a benign tumor or a secondary cancer. While the outcome is unknown we are still very much dealing with something and it could be better, as bad, or worse than what we have suspected. It is for this reason that everyone is now suggesting that we go in and biopsy the spot. Lynley and I always realized that this was a possibility but we wanted to spare Sydney some of the risks if possible. Since we have tried everything else and not found any answers it is now time to take this step. No one is favoring hanging around to see what this turns into, if we can avoid it.

The current plan on the biopsying of the spot has changed. Originally we had discussed an open (surgical) biopsy or resection. However, Dr. Heidi Russell has put forth another idea which seems far less invasive. Texas Children's has a great interventional radiologist who feels confident that he can get in and get some worthwhile samples. I am not sure of the radiology involved but they will be using an MRI or CT to guide the biopsy. In this way they will be more sure that they are biopsying the correct spots. From what I understand they are planning on taking 3 samples. Currently this procedure is planned for Wednesday morning in Houston but that may change if Lynley has anything to do with it. Bottom-line, we believe it will happen either this week or the next and I probably will not know for sure until later tonight. To throw another wrench into all of this, I am going to be in Houston tomorrow morning anyway for a check presentation. We have a group of families that have done a tremendous job of raising money for neuroblastoma research in the area and we are going to be making the official presentation of the check that made a new and exciting clinical trial possible. If we plan on doing the biopsy on Wednesday Sydney and Lyn can just plan on coming down tomorrow and we can make a mini one day vacation of it. Regardless, no one will probably know until we have already committed and I will be leaving at sometime near 4:00 AM. Updates to the diary will be sporadic.

See! I told you there has been a lot going on. It has been a roller coaster during the last few days. We are, however, moving closer to answers. Most importantly my family remains happy. We will get there. Thank you for your continued prayers.

With hope and purpose,

Mark