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

Flyer
Entry Form

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

Maps
View Map
Google
MapQuest
Microsoft
Yahoo

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!!