Good morning! Well, I have a ton to talk about. I guess after 5 years of reading my diary that really should not come as a shock to many. This weekend was jam packed. So, I guess I will take it in order. It all started on Friday with Sydney's birthday. Wow, seven! I am still amazed. She had a great day hanging around the house spending time with Mimi and Papa. That night we would have her birthday dinner at the Japanese kitchen, her favorite restaurant. For the other kiddos it was a sad day. Although the reality really did not sink in for them it surely did for us. This was the last day the kiddos would dawn those halls and the last days we would see many of those teachers that had become such a huge part of our lives. For four years they have been daily fixtures in our lives. They will be missed so much. One, however, will not. Miss Claudia, one of our favorites and one of Sydney's first teachers, will be spending time with us at the Dungan household throughout the summer. It is really quite a coup. We are extremely excited.
Miss Claudia is as tough as nails and I think she will be great for the kiddos. They won't be getting anything by her. As much as I love my kiddos, I know full well they need to be led with an iron fist. Boot camp summer here we come! She is no push over and she knows all of their tricks. Poor, poor Ainsley. All kidding aside. Miss Claudia has been one of their favorite teachers. Had Arborlawn stayed open Ainsley would have been entering her class this year so it is actually perfect timing. I think this will work well for everyone.
Saturday was Sydney and Ainsley's official birthday party. To be honest, I had my reservations. I thought it was going to be a flop. Lynley and the kiddos had chosen to have it at GSX, a local gym. I thought they were out of their minds. Boy was I wrong. It turned out to be the perfect place and entirely age appropriate. The kids had a blast and perhaps more fun than they have had anywhere prior. They really did a great job catering to the rugrats. If you are look ing for an activity this summer I would highly recomeend it. Apparently they have some great children's programs and a mother's day out program. Best of all, when it was over, it had completely drained them and they were all ready for a nap. This backfired on me because as soon as the kiddos fell asleep Lynley put Dr. Bob and I to work on the gate in the backyard. We spent the better part of the afternoon replacing and re-architecting 2 wooden gates. By the end of the day she had successfully worn us all out. The good news, however, is that we now had two brand new gates that actually work. Grrrr. Power tools. My manhood was returning. There is something special about holding drills, banging hammers and drinking beer with your veterinarian.
Sunday was a bit more relaxing but still busy. As Lynley calls it, it was Cinderella Sunday. It is chore day, time for Lynley to clean the house and for me to become mountain man, conqueror of the laundry pile. We had both mastered our respective chores by early afternoon. When the kiddos woke from their naps we made a trip to Cook's to visit Hayden.
They have finally completed most of the staging process. The good news is that Hayden is stage III. The bad news is that he is high risk. This means that he will be following the most aggressive of protocols. We spent a little over an hour talking with them and providing as much information and support as we could. Although I was saddened to hear that he was staged high risk I was quite pleased to see the trial that they had selected for Hayden. My mind is not quite clicking this morning so I don't remember the specific protocol number but I can tell you a little about it off hand. The protocol changes up induction with the inclusion of Cytoxan and Topotecan during the first two rounds of induction chemotherapy. It then follows the same regimen that Sydney did. Rounds 3 and 5 include Cisplatin and VP-16 and rounds 4 and 6 include Cytoxan, Vincristine and Doxorubicin. There is then a randomization between single and double transplant. The reason that I like this particular regimen is that I believe that it offers some pretty good possibilities. For one, I believe it still allows you the opportunity to participate in the ch14.18 antibody trial on the back end and I have not checked to be sure but I think they will be eligible to participate in the Sodium Thiosulfate (STS) trial during the Cisplatin rounds. This could potentially protect his hearing. If it is possible to hook onto this trial concurrently it is something that I would definitely talk to my oncologist about.
Well, enough of my jabbering. I have to run.
Purpii awaits!
Monday, June 9, 2008
Friday, June 6, 2008
A brand new year
I am having a little of a late start this morning. Last night Dr. Bob gave us some tickets to the Rangers. We took the Dudester to the game and did not get back until late. I am still a little groggy. I know there are many waiting for word about little Hayden so I want to be sure to update. Unfortunately, at this point, I still do not know much. I stopped by the hospital yesterday morning to drop off some items from the school. Hayden was on his way to the first floor for a hearing test. They do this to establish a baseline of his hearing. Regardless, I really just saw them in passing. I actually had a duel purpose for being up at the hospital and my next stop was for a meeting. After my meeting I stopped back by the room to make sure they did not need anything and found Hayden back resting comfortably on his bed. He seemed pretty sedated and I know that the morphine is still pumping pretty steadily through his veins. Hayden looked comfortable and peaceful. It appeared to me that this was one of the first times that this family had any peace and quiet so I elected to leave them alone. I don't have any answers as to his staging. So, for now, I will just keep hoping and praying for the best.
I also ran into Dr. Eames again while I was up on the floor. It is so nice to see her. I feel like Pavlov's dog whenever I run into her. The moment I make eye contact with her I am immediately calmed. However she did it, she has trained me well. I am so thankful that she is caring for this family. That is not to say that Granger or Howery are not great as well. It just means that Hayden and his family are in incredibly capable and kind hands. In this sense, I am happy for them.
Now, I would be remiss if I did not mention what an incredibly special day today is. Did you know? Today is Sydney's 7th birthday. Can you believe it? Every year is an incredible milestone and just that much more special than the year before. She is turning into such an incredible young lady. I am amazed with what she has achieved in this last year. In my mind, this last year has been all about catching up. For many years we have constantly focused on all of the challenges that Sydney has had to face and during this last year it seems that we have traded in many of those for focusing on her victories and normalcy. Simply put, this was her first full year out of treatment, and she went from catching up to surpassing. I am tremendously proud. In a sense I will miss her year of being 6. It was a great year. But, I am anxious and thankful for the year of 7. May it bring her health and happiness. If last year is any indication there is much in store for her.
My purpose just gets stronger.
I also ran into Dr. Eames again while I was up on the floor. It is so nice to see her. I feel like Pavlov's dog whenever I run into her. The moment I make eye contact with her I am immediately calmed. However she did it, she has trained me well. I am so thankful that she is caring for this family. That is not to say that Granger or Howery are not great as well. It just means that Hayden and his family are in incredibly capable and kind hands. In this sense, I am happy for them.
Now, I would be remiss if I did not mention what an incredibly special day today is. Did you know? Today is Sydney's 7th birthday. Can you believe it? Every year is an incredible milestone and just that much more special than the year before. She is turning into such an incredible young lady. I am amazed with what she has achieved in this last year. In my mind, this last year has been all about catching up. For many years we have constantly focused on all of the challenges that Sydney has had to face and during this last year it seems that we have traded in many of those for focusing on her victories and normalcy. Simply put, this was her first full year out of treatment, and she went from catching up to surpassing. I am tremendously proud. In a sense I will miss her year of being 6. It was a great year. But, I am anxious and thankful for the year of 7. May it bring her health and happiness. If last year is any indication there is much in store for her.
My purpose just gets stronger.
Thursday, June 5, 2008
Our little buddy Hayden
Over the years since Sydney's diagnosis nothing has come to shock me. As I have grown closer, watched the beast through the research, and seen it in so many children; I have come to the point that absolutely nothing surprises me anymore. I have seen it nearly everywhere do nearly everything. I have seen identical disease in nearly identical children treated with identical drugs melt away one tumor in one child while ravaging the body of another. Nothing shocks me. I have come to expect both the best and the worst. I have learned to guard my statements and I know exactly what not to say. I have seen too much. It hurts when any child is diagnosed. I hate it but I know that it happens. When I can, I focus on helping the family and the child get through the process. That is something that I can do and, honestly, it is my favorite part of what I am able to do for the CNCF. Although I am not on autopilot because every child and family is different, it is something that I know intimately. I have been there hundreds of times. I know what I can do to help and I know what I can not do. There are no surprises.
I tell you all of this because Hayden's diagnosis has broken everyone of these rules. If I am being honest, it has rocked me to my very core. After a day of trying to process this I still am coming up blank. I can not believe that it has happening. It just won't sink in. It won't digest. I can't believe it.
Yesterday morning when I received the email from Hayden's family I was extremely skeptical. I mean, come on, what are the odds. Between Sydney's class and Hayden's in the last two years at Arborlawn their can't have been 50 kids. In fact, since Sydney started there at the age of 3 I can't imagine that they have had more than 150 different kiddos in the school. What are the odds of 2 of them being diagnosed with neuroblastoma? Don't get me wrong? I don't think there is a link. I don't think there is anything in the water. But still, I can't get my brain to wrap around it. It is for all of these reasons that I thought that there had to be some mistake. I almost did not write about in my diary. They had to be wrong. It isn't possible, much less fathomable.
After I dropped off the kiddos at school yesterday morning I ran by Cook's. At first I was relieved. His name was not on the board. What I did not realize at that moment was that he was indeed there, just registered under his step father's last name. Sure enough, as I walked down the hall there was that little boy that played with Graham on a daily basis. He looked so healthy. In fact, had he not been in one of those little blue hospital gowns with rockets and planets on it I would have expected him to be going to school. I would have expected him to be playing with Graham. Ironically, this week there were only two kiddos expected in Graham's class - Graham and Hayden. It gets even stranger when you realize that Sydney's very best friend through treatment was Hayden's step sister.
Regardless, it is entirely worthless to continue to debate why all of this won't sink into my head and how utterly unlikely this is. The point is that there is another very adorable little boy that looks to have entered the nb world. Hayden has been having issues with his tummy for quite some time. In fact, I can remember back to October of last year when Hayden was having tummy issues. His parents have been diligent at taking him back and forth from the doctor. It was in March when things really started to get worse. Like so many of the other children with neuroblastoma the symptoms mimicked other things, masking the ultimate diagnosis. It was not until they finally got him in for an ultrasound the other day that the large abdominal tumor became evident. The day since the discovery has been jam packed with tests, pokes and prods. Yesterday brought an echocardiogram, tumor biopsy, port placement, and bone marrow aspirate/bone biopsy. At this point Dr. Eames is 99% sure that it is neuroblastoma but it will take results from yesterday's biopsy to seal the diagnosis. In the days to come there will be a CT scan, an MIBG, and more I am sure. So far there is a good bit of news that has come out of all of this and this is what the family and little Hayden need from us right now. Fortunately, they have not been able to discover any metastasis in Hayden's body. His lymph nodes look clear and he is not showing any other sign of additional tumors. Yesterday he had a bone marrow aspirate and biopsy and today he will have some additional tests to rule in or out any other evidence of disease. This is critical for Hayden and why they need our prayers. These are the items that will define his staging and ultimately what the next few years will be like for Hayden. The difference in what they find are extremely significant. I would provide numbers but I don't know if the family is ready for that so you are just going to have to trust me when I tell you that the results are critical. It is the difference between intermediate and high risk disease. We need to pray that:
1. They do not find any disease in Hayden's bone marrow.
2. They do not find any disease on his bones or anywhere else in his body.
3. The testing on the tumor does not show NMYC amplification and the results come back with favorable histology and biology.
Please say some extra prayers for Hayden this morning.
Today we have new purpose.
I tell you all of this because Hayden's diagnosis has broken everyone of these rules. If I am being honest, it has rocked me to my very core. After a day of trying to process this I still am coming up blank. I can not believe that it has happening. It just won't sink in. It won't digest. I can't believe it.
Yesterday morning when I received the email from Hayden's family I was extremely skeptical. I mean, come on, what are the odds. Between Sydney's class and Hayden's in the last two years at Arborlawn their can't have been 50 kids. In fact, since Sydney started there at the age of 3 I can't imagine that they have had more than 150 different kiddos in the school. What are the odds of 2 of them being diagnosed with neuroblastoma? Don't get me wrong? I don't think there is a link. I don't think there is anything in the water. But still, I can't get my brain to wrap around it. It is for all of these reasons that I thought that there had to be some mistake. I almost did not write about in my diary. They had to be wrong. It isn't possible, much less fathomable.
After I dropped off the kiddos at school yesterday morning I ran by Cook's. At first I was relieved. His name was not on the board. What I did not realize at that moment was that he was indeed there, just registered under his step father's last name. Sure enough, as I walked down the hall there was that little boy that played with Graham on a daily basis. He looked so healthy. In fact, had he not been in one of those little blue hospital gowns with rockets and planets on it I would have expected him to be going to school. I would have expected him to be playing with Graham. Ironically, this week there were only two kiddos expected in Graham's class - Graham and Hayden. It gets even stranger when you realize that Sydney's very best friend through treatment was Hayden's step sister.
Regardless, it is entirely worthless to continue to debate why all of this won't sink into my head and how utterly unlikely this is. The point is that there is another very adorable little boy that looks to have entered the nb world. Hayden has been having issues with his tummy for quite some time. In fact, I can remember back to October of last year when Hayden was having tummy issues. His parents have been diligent at taking him back and forth from the doctor. It was in March when things really started to get worse. Like so many of the other children with neuroblastoma the symptoms mimicked other things, masking the ultimate diagnosis. It was not until they finally got him in for an ultrasound the other day that the large abdominal tumor became evident. The day since the discovery has been jam packed with tests, pokes and prods. Yesterday brought an echocardiogram, tumor biopsy, port placement, and bone marrow aspirate/bone biopsy. At this point Dr. Eames is 99% sure that it is neuroblastoma but it will take results from yesterday's biopsy to seal the diagnosis. In the days to come there will be a CT scan, an MIBG, and more I am sure. So far there is a good bit of news that has come out of all of this and this is what the family and little Hayden need from us right now. Fortunately, they have not been able to discover any metastasis in Hayden's body. His lymph nodes look clear and he is not showing any other sign of additional tumors. Yesterday he had a bone marrow aspirate and biopsy and today he will have some additional tests to rule in or out any other evidence of disease. This is critical for Hayden and why they need our prayers. These are the items that will define his staging and ultimately what the next few years will be like for Hayden. The difference in what they find are extremely significant. I would provide numbers but I don't know if the family is ready for that so you are just going to have to trust me when I tell you that the results are critical. It is the difference between intermediate and high risk disease. We need to pray that:
1. They do not find any disease in Hayden's bone marrow.
2. They do not find any disease on his bones or anywhere else in his body.
3. The testing on the tumor does not show NMYC amplification and the results come back with favorable histology and biology.
Please say some extra prayers for Hayden this morning.
Today we have new purpose.
Wednesday, June 4, 2008
Oh No!
I had many dreams of writing a very different journal entry today but it seems that I am at a complete loss for words. I am in shock and utter disbelief. It has left me, for once, nearly speechless. It seems that last night I received an email from a relative of one of the little boys in Graham's class at school. He is one of Graham's friends and his family is one that we have known for years. It seems that this little boy was just diagnosed with neuroblastoma.
This has hit way to close to home. It feels as though lightening has stricken twice.
I don't know what to say.
I can remember it all too vividly - that first night after diagnosis. The shock. The horror. The fear. I want to let them know that it will get better. I want to let them know that there is hope.
I know it sounds stupid but I just can't believe that another family and child have stepped into this world.
I hate this damn disease with every fiber of my being.
There is a new little boy that needs our prayers today.
Purpose is racing through my veins.
This has hit way to close to home. It feels as though lightening has stricken twice.
I don't know what to say.
I can remember it all too vividly - that first night after diagnosis. The shock. The horror. The fear. I want to let them know that it will get better. I want to let them know that there is hope.
I know it sounds stupid but I just can't believe that another family and child have stepped into this world.
I hate this damn disease with every fiber of my being.
There is a new little boy that needs our prayers today.
Purpose is racing through my veins.
Tuesday, June 3, 2008
Poop and Purpose
Wow, it is 6:00 AM and I already have 3 twerps surrounding me. It seems awfully early to be surrounded by twerps but I am honestly not going to complain. Although they are disrupting a bit of my work hours I, honestly, have bigger problems. You see, ever since I came back from Japan I have become addicted to sleep and my internal clock has gone on the blink. Instead of buzzing at 4:00 AM it now buzzes as late as 5:30 AM or 6:00 AM and sometimes it does not go off until I have rugrats jumping all over me in bed. I could get all stressed out about it because I am not getting the time to work on what I want to work on but I just figure I need the sleep. Over the past month or so I have been burning the candle on both ends. In fact, last week I can remember at least two 14 hour days. So, to make a long story short, if I am going to sleep a little late and get tackled by kids I am not going to get too stressed about it. There are still plenty of hours in the day to work but only so many to spend with the twerplets.
Yesterday was pretty busy and from a work perspective I accomplished absolutely nothing that I set out to. The day was one snafu after another that kept me from doing the tasks at hand. I had server problems at the hosting facility and domain name transfers that failed. Even the things that I planned to finish were not even started. As, you can see, the day did not go as planned. So, when the kids came home from school and wanted me to go swimming I thought. The water was still to cold. It was the exact opposite of what I had planned to do. So, why not? I jumped into my skivvies and made a nutty beeline into the water. As it turns out this was the first good decision I made all day. I had a blast with the kiddos. I had underwater races with Sydney. I had a floating contest with Graham. And, I did this all with Ainsley latched onto my side asking me to watch as she dunked her head under the water. It was the perfect complement to a truly messed up day. In fact, in retrospect ,it was the only "right" thing that I did all day. Thank goodness for the madness of my kiddos.
I did receive a bunch of emails telling me how cute Ainsley was in the pictures I posted yesterday. All I can say is: "SUCKERS!" That is exactly how she sucks you in. Everyone thinks she is all cute and sweet but I am telling you - watch out. Somewhere behind those innocent big eyes and wavy short locks lies the princess of twerpdom - mastermind of the unimaginable. Sure, go ahead and look, but be warned. She is capable of things that you have not even imagined.
Don't believe me?
I did not mention it before because it was too gross but do you know what she did while we were out swimming and playing in the back yard on Saturday? Do you? Well, she smeared her cute little poo all over the bathroom. She thought it would be great fun to paint with it on the mirror, on the cabinets, on the carpet and on the walls. Did I mention the walls were fabric? She also painted the tiles on the floor and the outside of the sink.
So, I will tell you again. Don't fall for it. Twerpdom lurks behind thine eyes.
Remember, twerps inspire both poop and purpose.
Yesterday was pretty busy and from a work perspective I accomplished absolutely nothing that I set out to. The day was one snafu after another that kept me from doing the tasks at hand. I had server problems at the hosting facility and domain name transfers that failed. Even the things that I planned to finish were not even started. As, you can see, the day did not go as planned. So, when the kids came home from school and wanted me to go swimming I thought. The water was still to cold. It was the exact opposite of what I had planned to do. So, why not? I jumped into my skivvies and made a nutty beeline into the water. As it turns out this was the first good decision I made all day. I had a blast with the kiddos. I had underwater races with Sydney. I had a floating contest with Graham. And, I did this all with Ainsley latched onto my side asking me to watch as she dunked her head under the water. It was the perfect complement to a truly messed up day. In fact, in retrospect ,it was the only "right" thing that I did all day. Thank goodness for the madness of my kiddos.
I did receive a bunch of emails telling me how cute Ainsley was in the pictures I posted yesterday. All I can say is: "SUCKERS!" That is exactly how she sucks you in. Everyone thinks she is all cute and sweet but I am telling you - watch out. Somewhere behind those innocent big eyes and wavy short locks lies the princess of twerpdom - mastermind of the unimaginable. Sure, go ahead and look, but be warned. She is capable of things that you have not even imagined.
Don't believe me?
I did not mention it before because it was too gross but do you know what she did while we were out swimming and playing in the back yard on Saturday? Do you? Well, she smeared her cute little poo all over the bathroom. She thought it would be great fun to paint with it on the mirror, on the cabinets, on the carpet and on the walls. Did I mention the walls were fabric? She also painted the tiles on the floor and the outside of the sink.
So, I will tell you again. Don't fall for it. Twerpdom lurks behind thine eyes.
Remember, twerps inspire both poop and purpose.
Monday, June 2, 2008
I have finally began to recover from the last two weeks of festivities. It has been busy but I think I finally beginning to catch up. I finally have adequate opportunity to do all of the things I should have been doing had I not been so busy. First, Ainsley's Birthday - in all of the hustle and bustle I had forgotten to post all of the pictures from her birthday party at the house. You will probably notice her newest toy - an official pink Barbie mobile. If it were possible to where ruts into concrete with a plastic car I can assure you it would have happened already. In fact, with all of the driving that she has done I can now state with reasonable evidence that it is truly impossible. However, it is not from a lack of trying.
You may also notice from some of the pictures that the Dungan pool is now open for business. Although it still was not warm enough for me (I require a minimum of 82 degrees), the kiddos are already enjoying it to it's fullest. My she has grown up hasn't she?
If you would be interested in seeing some of Ainsley's other birthday pictures you can find them here:
http://flickr.com/photos/62846396@N00/sets/72157605387355656/
The other good news about finally having a few minutes to catch up is that I can finally begin to post information about my trip to the Advances in Neuroblastoma Research (ANR) in Japan. I have completed my first article for the CNCF (there will be a series of articles). If you are interested in finding out more about the ANR, what it is about, and what I learned; you can read about it here:
Well, I must be off. There are articles to be written and purpose to accomplish.Friday, May 30, 2008
The Graduate
Can you believe it? We now have a certified first grader. Yesterday evening Sydney officially graduated from kindergarten. The day was jam packed with activities. First, in the morning, there was an award ceremony. Each child in the class was awarded for their various achievements throughout the year and then given an award for their personal gift to the class. As you might have imagined we did NOT win an award for perfect attendance. However, Sydney did win a couple of special awards, one of which for being a super star pupil in her computer class. See, and here you thought when I called myself a computer nerd I was just kidding. Sydney's special gift award was for compassion because she was such a compassionate little girl when it came to dealing with others. I was probably most proud of that award. There were special awards for dedication, persistence and all kinds of great personality traits but I must admit that I was particularly proud of Sydney's achievement. I can't think of a personal gift greater than compassion and it is always something that we have tried to ingrain in her. I would let her take credit for it (it being her personality trait and all) but it is clearly superior parenting. You may also note that I always won the special gift of humility.
Following the awards ceremony there was a pool party and then finally, at night, the official graduation ceremony. Now you may have heard me complain about a 2 hour cap and gown ceremony for the kindergarten class. However, I may have to change my tune a bit. They put on a show that was nothing short of incredible. There was singing and dancing. It was great entertainment. I was once again blown away with what they were able to accomplish with these young kiddos. There is simply no way my kindergarten class could have pulled it off. In fact, I would be surprised if my 5th grade class could have pulled it off. It kept us laughing and certainly kept everyone entertained. As soon as we get the video I will post it. Well, I had best be off. Another busy day lies before me.
One of my purpii has graduated. What an incredible milestone!
Following the awards ceremony there was a pool party and then finally, at night, the official graduation ceremony. Now you may have heard me complain about a 2 hour cap and gown ceremony for the kindergarten class. However, I may have to change my tune a bit. They put on a show that was nothing short of incredible. There was singing and dancing. It was great entertainment. I was once again blown away with what they were able to accomplish with these young kiddos. There is simply no way my kindergarten class could have pulled it off. In fact, I would be surprised if my 5th grade class could have pulled it off. It kept us laughing and certainly kept everyone entertained. As soon as we get the video I will post it. Well, I had best be off. Another busy day lies before me.
One of my purpii has graduated. What an incredible milestone!
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