Friday, August 29, 2008
This morning I am surrounded by my gaggle of twerps. They all got up extra early to see Sydney on CBS. Sydney has already reached an extraordinary level of anticipation as she noticed that Teresa Frosini, the reporter who interviewed her, is also the traffic reporter. It is funny. Each time Teresa comes on screen Sydney's excitement continues to grow. In fact, I had better hurry up and finish this entry so that I can try to contain this building excitement before it gets too out of control. Currently they are at level giddy but it is growing quickly.
I also want to give everyone a quick reminder to put next Friday, September 5th from 6:00 PM -8:30 PM on your calendar. The Fort Worth Community Art Center will be having our gallery opening of Geno Loro's photography. The show is called "Life - Through the Eyes of a Child Living with Neuroblastoma" and I can tell you that it is nothing short of spectacular. Also, many of the kiddos will be there with their artwork. There will even be autograph opportunities.
Okay, okay! The excitement is too high. We just saw the promo for the story with Sydney. I have to get a wrangle on my gaggle.
Off to my purpii!
Thursday, August 28, 2008
This summer was special. You see, I work primarily from home. I could go into an office but I really do enjoy being at home. During this summer the kiddos were also at our house. For the last couple of summers they had always spent the summer in day care. So, this was new - and special. I got used to hiding in the closet when I was on the phone so that you couldn't hear the kiddos in the background. I got used to being gang hugged every time I went downstairs for a cup of coffee. (By the way, this should be instituted around every office coffee pot in America. When your stressed out and getting that cup of coffee there is nothing like a hug. It really takes a whole bite out of the serious stress of work. It gives you perspective.)
The kiddos always knew that upstairs was off limits. That was where I worked. However, once a day, one of them always found a way to sneak upstairs to give me a hug or a snuggle at some point. Although there were many times when they interrupted a very busy time it always felt good to steal away for a 20 second cuddle or a kiss on the forehead. On slower days I could even go downstairs for a few minutes on break to either play with them or, what has become our favorite, to do magic tricks for them.
In all, I don't think I really saw them for more than about 10 minutes in any given workday but I am sure going to miss it. If you can not tell, I am really, really not ready for them to be gone. It wasn't perfect but now it just seems a little quiet and empty.
I will have to get used to not having my purpii around.
Wednesday, August 27, 2008
David Podeszwa and Honor Shearer came up with the idea. David is father of Alex who has stage IV neuroblastoma. As you may recall he also a pretty good friend. Honor is one of the Podeszwa's friends and also a comedian. She has been called the "Soccer Mom" of comedy. Regardless, they came up with this idea to have an event at the Improv in Addison (North Dallas), Texas. The Improv graciously agreed to give us the venue at a very nominal cost and the comedians, 4 in all, have all agreed to donate their time. This means that pretty much all of the proceeds will go into the CNCF's hands. Now, to make this make sense we had to make it work for the Improv too. We could not steal a profitable Friday or Saturday night. We had to make it work for them on one of their nights that were far less busy. It is for this reason that we decided to do it on a Wednesday evening, September 24th in fact. The really cool thing about this is, if we are able to create some success, we should be able to take this model around the country. Stand Up for Life could be in every body's hometown. You see, anything can make a difference. It just takes an idea an a decision to carry it through.
So, anyway, I digress. What does this have to do with Sydney and I being movie stars? Everything, really. To promote the show Honor contacted our local CBS affiliate and told them what we were doing. (Yes, she has some pull.) They were excited about the whole idea and were interested in telling the story of how it all began. The inspiration for Stand Up for Life came, in a way from Lunch for Life and, well, Lunch for Life came from inspiration from Sydney and all of the other kids battling the disease. They decided to do a story on Lunch for Life. The segment is called something like "Texans making a difference." It will air early on CBS's This Morning in the Dallas/Fort Worth Market on Friday and then again on their weekend show. Now, I really don't care for the personal recognition, but, I can tell you that this was great for neuroblastoma. They gave me some wonderful opportunities to talk about neuroblastoma and the importance of research. We shot the segment and Sydney's school and I know that they got some great footage. It was an opportunity to get out there to share the story and hopefully touch a few more hearts that are capable of creating some significant change. I am hopeful that it will also help promote the show, "Stand Up for Life" in Addison.
And, yes, Sydney feels like a movie star.
There you have it. I was playing hooky. I admit it.
But hey, I had a good reason. I had some serious purpose going on.
Monday, August 25, 2008
Saturday was a full day of squirt entertainment. It began with our usual breakfast at the Botanical Gardens.
As you can see from the picture we were not alone. However, you may also note that someone is missing from the picture. Yep, the Grahamster. The turtles did not keep his attention long and he was off scaling the rocks. Don't worry, we kept an eye on him.
Anyway, we had a great time running them through the Botanical Gardens. The kiddos had to show Trey all of their favorite spots. They were not pleased when us cranky adults started complaining about the heat and headed back to the car. That wasn't so bad, though. In the end that just meant that we were heading our way back to the pool and some cool refreshing swimming. The rest of the day would be nice and relaxing and was capped off with dinner at La Familia.
Sunday, of course, meant laundry and chores around the house. However, we were so efficient that it also meant some great fun washing the cars in the driveway and no less than 3 dips in the pool.
And some people think summer is over.
Well, it is back to purpose. I am off. Have a great day.
Friday, August 22, 2008
You are invited!
Friday, September 5th, 2008 from 6:00 to 8"30 PM
Ft. Worth Community Arts Center
1300 Gendy Street • Fort Worth, Texas 76107
Click on the picture to view larger size.
This portrait series by photographer Geno Loro Jr. juxtaposes the bitter truth and beautiful frailty of lives touched by this little-known, little-understood form of childhood cancer. At first glance, the children portrayed are deceptively ordinary – they play dress-up, they laugh, and some gaze curiously into the camera.
But a closer look reveals an unexpected wisdom in the eyes of each – a wisdom that comes from seeing much, suffering much, during a life that’s barely started. A wisdom that is, at times, laced with sorrow, and at others, with hope. A wisdom that will leave you with no doubt that these children are unlike any you have seen before – yet so much like any child you’ve ever known.
“Life – Through the Eyes of a Child Living With Neuroblastoma” is part of an effort by the Children’s Neuroblastoma Cancer Foundation (CNCF), along with Cook Children’s Medical Center and the University of North Texas Health Science Center (UNTHSC), to raise public awareness of this dramatically overlooked disease. Throughout the years Cook Children’s has been the first choice for treatment of children with neuroblastoma in North Texas. With a highly specialized focus on this cancer, the neuroblastoma program at the Hematology and Oncology Clinic of Cook Children’s offers even more hope to children touched by this deadly disease, both in Fort Worth and around the globe.
Recently, with the appointment of W. Paul Bowman, M.D. as the department chair of pediatrics for the Texas College of Osteopathic Medicine at the University of North Texas Health Science Center, groundwork has been laid to bring cutting-edge neuroblastoma cancer research to the forefront. A Neuroblastoma Grand Rounds has already been planned and a neuroblastoma symposium is on the horizon. These newly forged relationships complete a trinity of patient support, clinical care, and research – which will only serve to hasten a cure.
We often say that art imitates life. As you will see from these stunning photographs, in this case art inspires life.
My purpose is inspired.
Thursday, August 21, 2008
You may be wondering what is going on. Well, I will catch you up. You see, outside on the board there are a bunch of sticky notes. The sticky notes list various things that parents can buy or do to help out the class. These items run from bringing snacks to buying supplies and such for the class. Well, Lynley (Yes, Lynley) decided it would be a dandy idea if we bought the class pet - a frog. So, if you look closely in this picture you will see a small round green terrarium to their right. Inside this little froggy wonderland is one happy oriental fire-bellied toad. This picture also captures the moment that Mrs. Rogers realizes that frogs and toads are fed live crickets. In the interim the toad is named speckles, Sydney is freckles, and Mrs. Rogers is wishing she picked a different class pet.Graham had a great first day too. This entry would not be complete without a picture of him from his first few moments as well. You will have to bear with the quality of the photo. I was clearly quaking from the loss of my second child to "big boy" school.
I think you get the idea, however. Graham is on the right and Mrs. Peterson is in the middle. I am yet to meet Graham's new friend. Graham transitioned fairly well into the class. From what I understand he only had one OCD moment. Apparently he claimed one of the chairs as his own and had to come to terms with someone else sitting in what he believed to be his chair.
This will be good for him.
Well, I had best be off. It becomes boring when I tell you over and over again how busy I feel. I love it but there is just so much to do. In November alone I have 5 neuroblastoma events that I am heavily involved in and a mountain of meetings.
My purpose is at full throttle.
Wednesday, August 20, 2008
Sydney and Graham met their teachers yesterday. Both were very excited. It did not take them long to crack off their shy shells and get into the swing of things. They took the opportunity to explore and both found some familiarities and a place to call their own. I think they are both extremely excited. If bedtime last night was any indication of their excitement, I can tell you that there will be nothing holding them back this morning. They were riddled with giggles and bursting with crazy energy. I just hope they were able to fall asleep.
Here's to, yet, another new beginning of purpose.
Tuesday, August 19, 2008
The funny thing is that I am starting to recover now as well. I am no longer hanging on every word. Often I can make sense of our scenario before even meeting with them. In our current situation I know there is no answer and I know that the risk of treating her for something she might not have far outweighs that chance that something is truly going on. Here we are, well over a year from the point that the spot began showing up in her arm ande I am far more confident now that it seems to have stopped growing. She is happy and, as Dr. Eames pointed out, healthy. I don't want to jinx ourselves but Sydney truly looks great.
Of course, I still advocated for a PET scan for her arm but, honestly, I don't know enough as to whether it would provide us any clarity. My fear is that it will only show more confusion. If there is an expert out there who can advise my on the utility of a PET scan for Sydney's situation I would greatly appreciate it. Ultimately, I am looking for how it can clarify our situation. It simply may not be possible that it can do that. In other words, in our situation, if it is clean, does it really mean anything? We still know we have a spot in her arm. And, on the other side, if it is positive, does it really tell us anymore than we know already. I don't think so. But, then again, I certainly am not an expert in this area. Any answers?
Well, onto other exciting news. Last night was the beginning of the year "Meet the Teacher" event at Sydney's and Graham's school. Sydney's teacher is a new teacher by the name of Mrs. Rogers. I really like her. I think she will be great for Sydney. I hope she never reads this but she reminds me of a Disney Princess. I don't know if you have ever had the opportunity to talk to a "real" Disney princess. I have. I can tell you from my expert experience that Mrs. Rogers sounds and acts exactly like a real legitimate Disney Princess. I can't wait to see wait the year hold for my own princess in her care.
Graham is in Mrs. Underwood and Mrs. Peterson's class. I can not tell you how excited I am about this. If you recall this was Sydney's first set of teachers at Southwest Christian School. There is no doubt that they will be perfect for Graham. You see, Graham is a special case. Both Lynley and I are anal. We are just OCD about different things. That lets us be normal at least part of the time. Graham, unfortunately, got both halves of our "analness" thus creating the perfect storm of OCD. Yes, he got the best and worst parts of us. These teachers are the absolute best at helping him work through this. There is no doubt that they will cultivate Grahams incredible sweetness and sincerity and I know they will give him the tools to deal when his pencils aren't lined up perfectly. This is a huge step for Graham. I am so excited for him. In someways it is as if he is starting his own life. Tomorrow he goes from the collective we to his own self. He becomes Graham, his own personal identity. Awesome.
Well, I have taken enough of your time already. And, I assure you. I have a bucket of work to wade through.
I just wanted to share a little of my obsessive compulsive purpose with you today.
Monday, August 18, 2008
This year we will have a recipe form that can be downloaded and filled out for each recipe to make editing and printing that much easier and organized. To access that form please click on the following link:
Each recipe will be represented with a picture of the child, along with diagnosis, date of birth, age and web page address. Unfortunately, we are under a time crunch to get everything ready in time for the holidays and we need recipes to be submitted by August 24th, 2008. Please help us and send in your recipes.
Thank you in advance for your help. Please let everyone know that we will begin taking cookbook orders as soon as it is completed. They will be available on the Lunch for Life website (http://www.LunchforLife.org) near the end of September. If you have any questions please feel free to email me or firstname.lastname@example.org.
Thank you so much for your help. We will make a difference. We will cure neuroblastoma, one lunch and one recipe at a time.
This is what food purpose tastes like!
Friday, August 15, 2008
The zoo was a blast. I have nothing but positive things to say about that zoo. If we lived in Birmingham (which we would love to do) we would be their weekly. By the way, the train rides are worth every penny. We had a great time and the kids will remember it for years to come. As is usual for us, we just had fun trying to keep up with our mischievous twerps. We rode the carousel, dug up dinosaur fossils. and visited with most of the animals.
Well as with any trip it is always good to get back home in our own bed. We are thankful that Lynley's parents lent us a car for the ride home and that we made it here safely.
It is back to our wonderful grind. I am rejuvenated. I am ready to make a difference.
My purpii are back from vacation.
Wednesday, August 13, 2008
All in all it really is not so bad. The kids are having a wonderful time and, outside of being couped up much of the day due to the rain, aren't going too stir crazy. Today it looks like a trip to the Birmingham zoo. I will be sure to post some pictures.
Well, I had best be off. I do actually have to get some work done. I know, I know. I shouldn't be working on vacation. Just don't tell Lynley. If she found out I had been working every morning she would slap me upside the head with a thick piece of purpose.
Monday, August 11, 2008
Bone scan shows persistent abnormality/uptake in right proximal radius but it is definitely less and no other bone lesions seen. MRI is significantly improved as well with resolution of edema and the marrow enhancement is gone and soft tissue enhancement is significantly improved/less. Cortical lesion is unchanged.
More information will come when we get back to town and have a chance to see Dr. Eames in clinic. She will be conferring with Heidi Russell and others but I am quite sure that this will not change our direction. I am also anxious to see the scans and compare the prior imaging with my own eyes. Overall, we are happy with the results. The fact that we have some improvement is a good thing and is just one more piece of good news to put on the "Not Neuroblastoma" side of the scale.
So, the trip. The trip has been fun. The car ride was even pretty bearable. I was pleasantly surprised with how well it was tolerated by the gaggle. In fact, it was only Ainsley who was annoying. Oops! Are you supposed to say that about your child? Well, regardless, she was plenty annoying. She found great joy in repeating herself until she got what she wanted. You would be surprised at how much the kids need while riding in the car. "Daddy can you change the movie? Can you fix my Lego rocket that I broke it for the 1804th time this trip? Can you get me a drink Can I have a snack? Can you fix my Lego rocket that I broke it for the 1805th time this trip?" All of which was honestly okay. My kids are needy. I can except that. It was Ainsley's back ground hum of "Daddy can I have my blanky?" over and over and over that was pushing the envelope of insanity. It did not matter if you acknowledged her and told her how busy you were or not. She did not care how busy you were. She did not care if you were fixing Graham's Legos, getting something for Sydney, whether you were in the front seat, or whether you told her you would be glad to get it for her in a minute. She would continue to repeat herself, endlessly, until you got her whatever it was that she needed. Also, I can pretty much guarantee that as fast as you crawled back from the front seat and crawled back she would find something else to repeat herself endlessly about. In the end, it finally became more funny than annoying. She was like clockwork. My annoying little love bug.
The trip has been jam packed with far too much to cover here this morning. We have been to the science museum and the aquarium in Chattanooga. We have hiked through Montesano Mountain and even rode horses and chased pigs at the McCurdy farm. As a bonus Lynley's suburban even broke down while coming home last night. It seems, we may, in fact, have a choice of staying on vacation forever or getting a new car. It is all just another day on the Dungan family vacation.
And, yes, there is purpose to it all. We may just not know what it is yet.
Thursday, August 7, 2008
Good morning! We are officially on the road. I just wanted to let everyone know that the official results are in. Sydneys MRI and bone scan are both significantly improved. In fact,marrow edema is no longer detectible. I will post tomorrow when I am in front of a computer and not on my phone.
Today my purpose is driving.
Sent from my iPhone
Wednesday, August 6, 2008
Now, even though I know this for sure, it is not all a bed of roses. There are some thorns. First, it is greatly improved over the last scan. However, the last scan was 1 month postoperative so we would expect the last scan to be darker than usual. In this sense, it makes sense that this was an improved scan. Now, I was not able to compare this scan to any of the other prior scans. I don't pull that kind of weight. However, if memory serves me correctly I would have to say that it was improved from that scan as well. It will be close but I have a hunch that it seems to be slowly improving. That news is good enough for me - atleast for now.
Today I am hoping for the official report. I still do not have any idea of what the MRI will show. I am hopeful that it is as encouraging as the bone scan. I will post just as soon as I know anything.
It looks like the Griswold family vacation is on!
Each step is tentative but still with purpose.
Tuesday, August 5, 2008
Maybe I just need to start looking at scan days a little differently. Perhaps, I just need to be thankful that we have made it to another scan day. In that sense it is a milestone for which I am incredible thankful. But, on the other hand, scans always hold that fear and that terror. It comes down to what I say at almost every scan. It feels like a switch. Is it on or off. Will she live or will she die? It is a stomach turner no matter how I try to look at it.
So, I said much of this yesterday but here we sit on the dawn of two scans. To be honest, we still have no idea when they are going to be today. After 2 phone calls and 2 promises to call us back we still know very little. We just know that they are today. Regardless, at some point today she is scheduled for a bone scan and MRI.
The bone scan will be looking at her from head to toe. This is the same technology that we used when we originally found the spot in her arm. A bone scan is good for picking up abnormalities. However, it is not specific for neuroblastoma. It can pick up any kind of trauma whether it be from injury, infection, tumor (malignant or benign), or anomaly. Basically it can show us areas of concern but it can't tell us whether it is neuroblastoma for sure. So the characteristics that we are looking for is that this spot has not spread to other bones or other parts of the body. That would really increase the odds of this being some type of metastatic process consistent with cancer. Although, if your are a glass half full type of person, it could also just be that she injured herself in two separate parts of her body. I guess what I am trying to say is that if we saw that it had spread it would be pretty likely that it was cancer.
We will be using the MRI to just look at the spot on her arm. We are of course hoping for resolution but short of biopsying the spot and taking a vitamin a day we have done very little to fix whatever the problem was that caused the spot in the first place. We are hoping that the MRI will not show significant growth of the lesion or any more intensity in the marrow space.
Honestly, if I could have two wishes for Sydney it would be that this was something completely benign and that we could get some clarity as to what it is. Of course I want this not to be cancer but I also want to find out what it is so that we don't have to continue to put Sydney through all of these tortuous scans and tests. She deserves a break. She has been doing this every 3 months for 5 years.
Today's purpose is about hope, prayers, and clarity.
Monday, August 4, 2008
Sunday was a much more casual day around the Dungan household. It was 107 degrees outside so we did everything we could to stay cool. Some of that included shopping as we are getting ready for our vacation on Thursday morning. That, of course, is assuming that everything goes well tomorrow with Sydney's MRI and bone scan. Well, of course, well is a relative term. I have yet to really talk to Lynley about what she expects from the scans. I can tell you from my perspective that I would love everything to be completely resolved in her right arm. However, I know that is incredibly unlikely. This comes down to the simple fact that we still do not know what it is. We just know that it is probably not injury and not infection. Given that it is neither one of those and we have not done anything to rectify the situation, I can only imagine that it will be about the same or worse. For us, the question of "How much worse is okay?" is the question. At this point, I think we would be happy if the condition has not spread to other bones or areas. That would signify a malignant process. We are looking for something just slightly bigger. Maybe we are hoping that it is just big enough to be able to tell that it is something other than cancer. I am still holding out for a nice benign bone tumor of some sort. The good news is that Sydney is still asymptomatic. She is happy and having a great summer. That gives us hope that this may in fact not be our worst nightmare.
Well, I had best be off. Just because I am going on vacation does not mean that I have any less work or purpose. There is much on the horizon.
Another full day of purpose lies ahead.
Friday, August 1, 2008
- Work on Art Exhibition marketing materials - fail miserably.
- Gather and print research on liposomal and lipoprotein drug carrier formulations.
- Toner ran out on printer - damn. Go to Office Depot. (For the record. I hate Office Depot.)
- Finish printing research.
- Research MIBG study eligibility criteria.
- Drive to Cook's and talk to two families in transit about treatment options.
- Drop off research at Cook's.
- Drive to GCG to work on Neuroblastoma Art Exhibition marketing materials.
- Go to office to pick up Lunch for Life materials to be shipped out. (Darn forgot to mail them.)
- Drive to Geno Loro's studio to pick up conference photography and meet regarding Art Exhibition.
- Drive home to see kids at lunch. (get home just in time to put Ainsley and Graham down for naps.)
- Bid on neuroblastoma guitar auction on EBay while shoveling hot dogs and carrots down my gullet. Yum?!?
- Email family regarding vaccine trials in Houston.
- Email family regarding antibody questions.
- Review Marketing materials and comment.
- Change online donation process for CNCF website to include acknowledgements.
- Communicate and add website information regarding other Art Neuroblastoma Event in Los Angeles.
- Talk to Leslie at Cook's regarding Neuroblastoma Program.
- Talk to Andy at UNTHSC regarding Neuroblastoma Grand Rounds.
- Talk to Athena and begin work on setting up CNCF chapter in Houston.
- Edit and Review marketing materials again.
- Finish researching liposomal formulations - poolside yeah.
- Learn liposome technology well enough that I can now teach Sydney and she understands it. (She likes the idea by the way)
- Begin drafting emails to necessary parties to hopefully move research forward.
- Dry kids with beach towel.
Wow, what a day. See, I told you. Good things are happening. We are making progress.
A complete day of purpose. I just hope that today I am smart enough to put down work to swim with my purpii.