Good morning! Well today's barometer still shows no Internet, no phones, no cable and, unfortunately, no call from Dr. Eames. I am beginning to think I live in some type of parallel universe. Regardless, that is the latest.
Today is another busy day but for a different reason. I have a golf tournament in Dallas. This one is for Wipe Out kids cancer. I will be playing with a few other dad's of children with neuroblastoma and frankly, I am looking forward to it. It will be quite an improvement from standing in the corner of the kitchen with my right arm covered in tin foil as I try to get a better signal from my neighbor's wireless Internet. It is not particularly comfortable or productive.
The kiddos are all doing very well. Sydney, Graham and Ainsley all spent last night carving pumpkins. One of my favorite activities is listening to kids speak to each other unencumbered by adults. I am amazed by the exchanges. I wonder how they come up with this stuff. Graham and Sydney were both elbow deep in pumpkin guts when this very matter of fact exchange took place. Graham had made a bit of a mess and Sydney chastised him for it.
Graham: "Sydney, I like you, but, sometimes you are bad."
Sydney (nonchalantly): "I am not bad."
Graham: "Well, you are bad to me."
Sydney: "No Graham, I am not bad to you. I am mean to you."
Graham: "No, I still think you are bad."
They then continued to talk about carving their pumpkins. Now, I know by looking at this discussion what you must be thinking. It is a bit strange. What did I find so funny about this? Well, it is one of those things that you just have to have been there and I don't want to forget it. So I am keeping it here in my diary. The thing that really made this discussion so funny was there perfectly calm and cheerful demeanor. They might as well have been talking about their favorite flavor of ice cream. They were perfectly cordial and both perfectly pleased. I don't think I have ever seen anything like it.
Kids say the strangest things.
My purpii keep me thinking everyday.
Thursday, October 30, 2008
Wednesday, October 29, 2008
Could it be neuroblastoma?
Another day and, once again, I have no phones, Internet, or cable. I am in utter shock. We have made the decision today to give up on Charter. We will be moving to another company.
Thankfully, Dr. Louis knew to call me on my cell phone so I had a great opportunity to talk to her yesterday. As I mentioned previously there is certainly less known than there is unknown. However, I did learn some things that I did not know previously. For starters, in other renditions of the vaccine that where given to kids with other types of cancers they were able to detect the vaccine for up to 10 years. The problem was that they never saw this in solid tumors like neuroblastoma. In fact, it now looks like Sydney may very well be the new long time record holder in solid tumors.
The question is: why?
We speculated for a bit on the phone. While I was correct that the purpose of the EBV was to keep stimulating the cells, we can not rule out the fact that disease (neuroblastoma) could have the same stimulatory effect. In other words, although it was not necessarily the exact sequence of events that was predicted when the vaccine was designed it is certainly a possibility. Furthermore, it is the reaction we would want to see if she had low levels of neuroblastoma in her body. We would want her body producing increasing amounts of these cells that could theoretically identify and kill neuroblastoma. I, of course, think it is incredible scientifically but it makes my stomach turn to think that if this is, in fact, a true hypothesis; then neuroblastoma is swimming around inside Sydney. I don't like that. Or, I only like that if the vaccine is in fact doing it's job and the t-cells are killing the neuroblastoma. I only like this if it is a cure for her - and others.
So, what do we do?
Well, we will be retesting her. We are scheduling a new bloodletting as we speak and I am trying to coordinate a bone marrow aspiration and biopsy at the same time. In my novice, un-medically educated opinion it is time to do that again. - of course, I have already developed some pretty good arguments. I am still waiting to hear back from Dr. Eames. I did not hear back from her quickly so I have to assume that she is away from the office. I will keep you updated as I hear something.
Well, as you can see, a lot of unknowns. Regardless, I am off to another day of purpose.
Thankfully, Dr. Louis knew to call me on my cell phone so I had a great opportunity to talk to her yesterday. As I mentioned previously there is certainly less known than there is unknown. However, I did learn some things that I did not know previously. For starters, in other renditions of the vaccine that where given to kids with other types of cancers they were able to detect the vaccine for up to 10 years. The problem was that they never saw this in solid tumors like neuroblastoma. In fact, it now looks like Sydney may very well be the new long time record holder in solid tumors.
The question is: why?
We speculated for a bit on the phone. While I was correct that the purpose of the EBV was to keep stimulating the cells, we can not rule out the fact that disease (neuroblastoma) could have the same stimulatory effect. In other words, although it was not necessarily the exact sequence of events that was predicted when the vaccine was designed it is certainly a possibility. Furthermore, it is the reaction we would want to see if she had low levels of neuroblastoma in her body. We would want her body producing increasing amounts of these cells that could theoretically identify and kill neuroblastoma. I, of course, think it is incredible scientifically but it makes my stomach turn to think that if this is, in fact, a true hypothesis; then neuroblastoma is swimming around inside Sydney. I don't like that. Or, I only like that if the vaccine is in fact doing it's job and the t-cells are killing the neuroblastoma. I only like this if it is a cure for her - and others.
So, what do we do?
Well, we will be retesting her. We are scheduling a new bloodletting as we speak and I am trying to coordinate a bone marrow aspiration and biopsy at the same time. In my novice, un-medically educated opinion it is time to do that again. - of course, I have already developed some pretty good arguments. I am still waiting to hear back from Dr. Eames. I did not hear back from her quickly so I have to assume that she is away from the office. I will keep you updated as I hear something.
Well, as you can see, a lot of unknowns. Regardless, I am off to another day of purpose.
Tuesday, October 28, 2008
Activated t-cells - really?!?
Good morning. I guess you are probably wondering where I have been. Would it surprise you if I told you I was still without internet access from charter? Am I being emotional here? Isn’t this a bit ridiculous?
Well, just because I have not had internet access, it does not mean that exciting things have not taken place. Over the last few days we had a great golf tournament and even received report cards for the kiddos. It has been an exciting time. I will have to remember to tell you about them. However, right now, I just can’t get something off of my mind. I received a rather interesting email from Dr. Chrystal Louis regarding Sydney’s blood that we sent down to Houston. It has me in quandary. I have included the pertinent information from her email below. Here we go:
As you may know, part of the follow-up samples that we obtain from Sydney (and each patient) allows us to look for evidence of the cells that we infused. The activated T cells and EBV-CTLs were each transduced with a slightly different form of the GD2 receptor. We look for copies of each transgene, by PCR, in every follow-up sample. Sydney’s latest sample showed elevated copies of one of the transgenes. So what does this mean???
1) Was Sydney sick at the time of the blood collection? If she was, this could be a “viral” reactivation of GD2+ cells.
2) What was the result of her MIBG scan? Could this be secondary to a low level of disease and we happened to collect her at a time when she had a large number of cells in the peripheral blood?
3) Is this a false positive? Our lab has repeated the testing and does not think so, but they have requested an additional sample to confirm the results.
If we are able to confirm them, it would help to prove that T cells transduced with a GD2 chimeric antigen receptor are able to survive long-term after infusion. However, I appreciate that it requires an additional blood draw for Sydney. After much discussion, we felt that obtaining confirmation of the results was important enough to request an additional sample.
Scary? Well, yes, kind of. Given the fact that she was not sick at the time of the infusion and that their lab does not feel that this is a false positive I don’t think I like the other option. In fact, I don’t really know if I necessarily agree with her conclusions. In my novice view I would not expect the virus to be activated by a low level of disease. I know it sounds counterintuitive but it was the EBV (Epstein Barr Virus) that was expected to keep reactivating the cells. I do not believe that was the purpose of the antibody. The antibody was just the magnet to the neuroblastoma. In my understanding I never would have expected them to activate the GD2+ cells. However, that is less of a known fact and more of theoretical hypothesis. Bottom-line, I would have expected EBV to be the culprit.
Regardless, this is very interesting. From a scientific point of view, it could mean a tremendous amount. I have to admit that this is at least a little revolutionary. However, there is far less known that there is that is known about this vaccine and it’s apparent effects inside Sydney than there is that is known. I don’t believe that the 3 theories provided by Dr. Louis are the only possibilities. There are more.
So, for me, the question becomes – “What do we do now?” I am less concerned about the blood draw. That is a necessary evil for Sydney. As much as I hate putting her through another blood draw given her finicky veins, I think this is very important to know. I also wonder whether it may be worthwhile to move up her bone marrow aspiration to do at the same time. It would be interesting to me to see what is going on in there for more reasons than one. I don’t have the answers.
I have put calls into the powers that be. I am hoping to have a follow up discussion with both Dr. Eames and Dr. Louis today.
It is a very interesting day of purpose.
Well, just because I have not had internet access, it does not mean that exciting things have not taken place. Over the last few days we had a great golf tournament and even received report cards for the kiddos. It has been an exciting time. I will have to remember to tell you about them. However, right now, I just can’t get something off of my mind. I received a rather interesting email from Dr. Chrystal Louis regarding Sydney’s blood that we sent down to Houston. It has me in quandary. I have included the pertinent information from her email below. Here we go:
As you may know, part of the follow-up samples that we obtain from Sydney (and each patient) allows us to look for evidence of the cells that we infused. The activated T cells and EBV-CTLs were each transduced with a slightly different form of the GD2 receptor. We look for copies of each transgene, by PCR, in every follow-up sample. Sydney’s latest sample showed elevated copies of one of the transgenes. So what does this mean???
1) Was Sydney sick at the time of the blood collection? If she was, this could be a “viral” reactivation of GD2+ cells.
2) What was the result of her MIBG scan? Could this be secondary to a low level of disease and we happened to collect her at a time when she had a large number of cells in the peripheral blood?
3) Is this a false positive? Our lab has repeated the testing and does not think so, but they have requested an additional sample to confirm the results.
If we are able to confirm them, it would help to prove that T cells transduced with a GD2 chimeric antigen receptor are able to survive long-term after infusion. However, I appreciate that it requires an additional blood draw for Sydney. After much discussion, we felt that obtaining confirmation of the results was important enough to request an additional sample.
Scary? Well, yes, kind of. Given the fact that she was not sick at the time of the infusion and that their lab does not feel that this is a false positive I don’t think I like the other option. In fact, I don’t really know if I necessarily agree with her conclusions. In my novice view I would not expect the virus to be activated by a low level of disease. I know it sounds counterintuitive but it was the EBV (Epstein Barr Virus) that was expected to keep reactivating the cells. I do not believe that was the purpose of the antibody. The antibody was just the magnet to the neuroblastoma. In my understanding I never would have expected them to activate the GD2+ cells. However, that is less of a known fact and more of theoretical hypothesis. Bottom-line, I would have expected EBV to be the culprit.
Regardless, this is very interesting. From a scientific point of view, it could mean a tremendous amount. I have to admit that this is at least a little revolutionary. However, there is far less known that there is that is known about this vaccine and it’s apparent effects inside Sydney than there is that is known. I don’t believe that the 3 theories provided by Dr. Louis are the only possibilities. There are more.
So, for me, the question becomes – “What do we do now?” I am less concerned about the blood draw. That is a necessary evil for Sydney. As much as I hate putting her through another blood draw given her finicky veins, I think this is very important to know. I also wonder whether it may be worthwhile to move up her bone marrow aspiration to do at the same time. It would be interesting to me to see what is going on in there for more reasons than one. I don’t have the answers.
I have put calls into the powers that be. I am hoping to have a follow up discussion with both Dr. Eames and Dr. Louis today.
It is a very interesting day of purpose.
Thursday, October 23, 2008
Internet?
You are not going to believe this but I still do not have internet access – or phones for that matter. This is now going on a week. How’s that for service? Aren’t you itching to go sign up for Charter?
Yesterday, went splendidly. The taping for the cable TV segment went very well – at least I think it did. Although I had roughly 25 minutes I did not really have the opportunity to get everything I wanted to in. That probably does not surprise anyone that knows be well. Regardless, I covered many of the most important points and it was another opportunity to get the word neuroblastoma out there. I will be sure to post information here when it airs. I hope I have cable by then.
So, tomorrow is the golf tournament, and I desperately need some help. One of the guys in my foursome cancelled on me – something about taking care of kids. He knows all too well that is about the only excuse that carries any water with me. However, that does not fix the problem. I am still a golfer short. I need one. So I have another trade to offer. Be a part of my foursome and I will share this incredibly cute video. Yes, I know, you think the one yesterday was satisfying. This one is 10 times better. The problem is you can only watch it if you email me and agree to be the fourth player on my time. Come on, I need your help! I really need a fourth player. Who is it going to be?
In the time being I am going to post the video below. Just remember, you aren’t allowed to watch it until I get my fourth player.
In all due seriousness, I really do need a fourth. Please email me at mdungan@lunchforlife.org if you can play.
It is for a great purpose.
Wednesday, October 22, 2008
Liposomes, Lipoproteins, and LipoNormans
Good morning! Well, it has not taken long to get back into the swing of things. A couple of scans and its seems that normalcy returns. This is indeed the week of busyness. Yesterday I attended Grand Rounds at Cook Children's. This was a two part presentation. The first, by Dr. Granger, was an overview of neuroblastoma, its symptoms, diagnosis, treatment, and the future of research. The second presentation was by Dr. Lacko from the University of North Texas Health Science Center. His presentation was about his work with lipoproteins. As many of you know I am doing some work on some liposomes so I found this very interesting. Both are similar models of drug delivery but have slightly different ways of going about it. In generalized terms, the idea behind this science is to utilize nanotechnology to encase chemotherapy(or other drugs) in a bubble. The job of the bubble is to carry the drug to the tumor cell and release it there. It gets far more technical than this but you can see how this idea might help to concentrate drug at the tumor site and help reduce the toxicity of the drug to other organs. It is ingenious really. I believe in the work that we are doing with liposomes. However, I enjoyed seeing some of the potential benefits of using lipoproteins. The bottom line is that lipoproteins are theoretically able to live in the body longer because they are naturally occuring within the body. The problem with this lipoprotein formulation is the potential for liver toxicity which we do not see in the liposomal formulation. In the end we are, in a way, battling semantics. Our liposome formulations have already been in adults and we are actively testing the drug in mice with neuroblastoma as we speak. The lipoprotein formulation is at least 18 months from going into humans so in my mind we are betting on the right horse. Regardless, I do think that lipoproteins might be a suitable carrier for Fenretinide and they just might help with some of that drugs delivery problems. I will at least get the parties talking. You never know what might happen.
See, I told you yesterday was busy. Today will be busy as well. This morning I am due at the studio to tape a 30 minute segment on neuroblastoma and the work that we are doing with Lunch for Life and the CNCF. It ought to be very interesting. I am looking forward to the opportunity to get the word out.
Now, finally, I think if you have hung around long enough to hear me dribble about research then you truly deserve some kind of reward. However, I also need to use this as bait to get more golfers in my golf tournament. So, here is my offer:
If you will sign up to play in my golf tournament on Friday then you can watch this really extremely cute video. This video illustrates the new method that Graham came up with to walk Norman. In fact, if you watch you will quickly realize that Norman is actually walking Graham. And actually, if you think about it, Norman is actually kind of like a liposome carrying Graham. (I just have to figure in the bubble.) Oh well, the one thing I can promise you is that this video is well worth the price of golf and the opportunity to raise money for neuroblastoma research.
Remember, only watch this video if you are going to play in the golf tournament!
Please don't call the animal police or CPS.
Hey, what can I say? I have a purpose!
See, I told you yesterday was busy. Today will be busy as well. This morning I am due at the studio to tape a 30 minute segment on neuroblastoma and the work that we are doing with Lunch for Life and the CNCF. It ought to be very interesting. I am looking forward to the opportunity to get the word out.
Now, finally, I think if you have hung around long enough to hear me dribble about research then you truly deserve some kind of reward. However, I also need to use this as bait to get more golfers in my golf tournament. So, here is my offer:
If you will sign up to play in my golf tournament on Friday then you can watch this really extremely cute video. This video illustrates the new method that Graham came up with to walk Norman. In fact, if you watch you will quickly realize that Norman is actually walking Graham. And actually, if you think about it, Norman is actually kind of like a liposome carrying Graham. (I just have to figure in the bubble.) Oh well, the one thing I can promise you is that this video is well worth the price of golf and the opportunity to raise money for neuroblastoma research.
Remember, only watch this video if you are going to play in the golf tournament!
Please don't call the animal police or CPS.
Hey, what can I say? I have a purpose!
Tuesday, October 21, 2008
Sanity Restored
Well, I am back. It feels so entirely great to be back in the swing of the Internet. I have only been without it for 5 days but it seemed like a lifetime. It felt like a little "piece" of me was gone. I know a lot of "peace" in me was gone. Regardless, I am slowly regaining my sanity.
I want to remind everyone of an upcoming golf tournament. It is this Friday afternoon. I know it is short notice but we could still use a few foursomes. Please consider coming out and supporting Lunch for Life and the Children's Neuroblastoma Cancer Foundation. I know how impersonal this blog can feel. You may wonder. Is he talking to me? In short, YES! I really need your help. If you live or know anyone in the Dallas/Fort Worth area then I am talking to you. We need golfers. We need you to come out and play. This is one of those times when you really can make a difference. Please go to the website and sign up to play. The information can be found below:
Event Name: Scramble for a Cure
Benefiting: Lunch for Life and Children's Neuroblastoma Cancer Foundation
Location: The Golf Club at Castle Hills
Date / Time: 10/24/2008 01:30 PM - 05:30 PM
Address: 699 Lady of the Lake Blvd.
Lewisville, TX
United States
Phone: 972-899-7400
There are a few ways in which you can help.
http://www.miraclegolfconcepts.com/eventdetail.php?id=292
Below you can find the tournament brochure which includes information on Lunch for Life, the tournament, and Grayson. We’re having to limit the field to 120 players, so please sign up sooner than later if you’d like to play. There will be plenty of give-aways, contests, dinner, and a silent auction with numerous autographed pieces of memorabilia.
Lunch for Life Tournament Brochure- 2008.pdf - Adobe Acrobat Professional.pdf
Today is golfing purpose.
I want to remind everyone of an upcoming golf tournament. It is this Friday afternoon. I know it is short notice but we could still use a few foursomes. Please consider coming out and supporting Lunch for Life and the Children's Neuroblastoma Cancer Foundation. I know how impersonal this blog can feel. You may wonder. Is he talking to me? In short, YES! I really need your help. If you live or know anyone in the Dallas/Fort Worth area then I am talking to you. We need golfers. We need you to come out and play. This is one of those times when you really can make a difference. Please go to the website and sign up to play. The information can be found below:
Event Name: Scramble for a Cure
Benefiting: Lunch for Life and Children's Neuroblastoma Cancer Foundation
Location: The Golf Club at Castle Hills
Date / Time: 10/24/2008 01:30 PM - 05:30 PM
Address: 699 Lady of the Lake Blvd.
Lewisville, TX
United States
Phone: 972-899-7400
There are a few ways in which you can help.
- Play in the event as a single or build a 4-some. You can either contribute $150/person or play for free, and receive PGA Tour Superstore credit, by helping raise a little money by sending around a pre-drafted letter to friends and family (see website for details).
- If you’re not a golfer, you can help by sponsoring me in any an amount you’re comfortable with (there are no minimums).
- Send this to everyone you know.
http://www.miraclegolfconcepts.com/eventdetail.php?id=292
Below you can find the tournament brochure which includes information on Lunch for Life, the tournament, and Grayson. We’re having to limit the field to 120 players, so please sign up sooner than later if you’d like to play. There will be plenty of give-aways, contests, dinner, and a silent auction with numerous autographed pieces of memorabilia.
Lunch for Life Tournament Brochure- 2008.pdf - Adobe Acrobat Professional.pdf
Today is golfing purpose.
Monday, October 20, 2008
Clean Scans - Still no Internet
Good morning! Well, I am happy to announce that Sydney’s scans were pronounced clean. I received the call from Dr. Eames on Friday. Of course, you don’t know this because the internet still is not functional at my house. Once again, we can thank Charter for that. I really don’t want to go into a rant so I will simply leave it with saying “Charter is an awful company with poor quality service and even worse support.”
Sydney’s scans were actually even better than expected. These scans were virtually useless at looking at her spot in her arm – it was never detected by MIBG or CT – but that is not to say that they did not have value. First and foremost they did not show solid tumor disease. That, in and of itself, is quite an excellent finding. Furthermore, the scans did not show any anything by MIBG. That means there were no signs of MIBG positive disease anywhere in her body. Although we do not know whether she is MIBG positive any longer it still is a good feeling to see a clean scan. Finally, and this was the bonus prize, her sinuses were “greatly” improved. Do you know how long Sydney’s sinuses have been jam packed with crud? Years! Several! In fact, unbeknownst to many I have dedicated a small portion of my life to doing nothing but fighting this dreaded snot – often at the ridicule of my wife. She found my dedication laughable in the months of failure. I was religious about delivering the three drug concoction to defeat the snots. But, I stand here today proudly holding on to her bottles of Singulair, Astelin and Nasonex with a sense of pride.
I defeated snot.
Just one single facet of my purpose.
Sydney’s scans were actually even better than expected. These scans were virtually useless at looking at her spot in her arm – it was never detected by MIBG or CT – but that is not to say that they did not have value. First and foremost they did not show solid tumor disease. That, in and of itself, is quite an excellent finding. Furthermore, the scans did not show any anything by MIBG. That means there were no signs of MIBG positive disease anywhere in her body. Although we do not know whether she is MIBG positive any longer it still is a good feeling to see a clean scan. Finally, and this was the bonus prize, her sinuses were “greatly” improved. Do you know how long Sydney’s sinuses have been jam packed with crud? Years! Several! In fact, unbeknownst to many I have dedicated a small portion of my life to doing nothing but fighting this dreaded snot – often at the ridicule of my wife. She found my dedication laughable in the months of failure. I was religious about delivering the three drug concoction to defeat the snots. But, I stand here today proudly holding on to her bottles of Singulair, Astelin and Nasonex with a sense of pride.
I defeated snot.
Just one single facet of my purpose.
Friday, October 17, 2008
Waiting and waiting
Okay, so I have been without cable, Internet access or phone service this morning so I really don't know anything. In fact, for all I know, my family could be the only surviving family from an alien invasion and I would know no better. In fact, the only thing I am truly sure of is that I don't like Charter Communications. There is rarely an entire week that goes by that we don't have an outage of some sort. I am amazed that a company has gotten as large as theirs with such horrible service and even worse support. Is that enough of a rant?
So, I get it. I am touchy. But, in my defense I still have not heard from Dr. Eames regarding Sydney's scans. I have gotten past the immediate phone calls. The ones that you get when it is obvious that there is something amiss. I am truly thankful for that. Now I must wait out whether the scans are clear or whether they are being reviewed and discussed in more detail. Like I said, I get it. I see how it works. So, I will just sit and wait and worry. I am good at it. I will let everyone know as soon as I know anything.
For those of you looking for an amateur radiology report I am really not prepared to give one. I never got to see the full view. In fact I just saw the small Sydney on the screen. I can tell you that her abdomen was once again chock full of nuclear waste. This is usual and why I don't like reading MIBG scans. However, from what I could tell in my limited view of the hips and above she looked pretty clean to me. But honestly, I did not getting a very good viey so I could be missing a slew of small things. I have no confindence either way but am very happy that I did not spot something obvious.
On a separate note, I technically don't know whether I am allowed to talk about it or not but we have a close friend of our family that is going through the process of a breast cancer diagnosis. She is a mom and a wife and an incredible person that has played a major role in our lives. It just kills me that she is having to walk this path. I am just praying that the prognosis is good. I don't really have much else to say on the subject right now. I just felt like talking about it. I just wanted her to know that we are continuing to think about her and her family.
I have a multifaceted purpose today.
So, I get it. I am touchy. But, in my defense I still have not heard from Dr. Eames regarding Sydney's scans. I have gotten past the immediate phone calls. The ones that you get when it is obvious that there is something amiss. I am truly thankful for that. Now I must wait out whether the scans are clear or whether they are being reviewed and discussed in more detail. Like I said, I get it. I see how it works. So, I will just sit and wait and worry. I am good at it. I will let everyone know as soon as I know anything.
For those of you looking for an amateur radiology report I am really not prepared to give one. I never got to see the full view. In fact I just saw the small Sydney on the screen. I can tell you that her abdomen was once again chock full of nuclear waste. This is usual and why I don't like reading MIBG scans. However, from what I could tell in my limited view of the hips and above she looked pretty clean to me. But honestly, I did not getting a very good viey so I could be missing a slew of small things. I have no confindence either way but am very happy that I did not spot something obvious.
On a separate note, I technically don't know whether I am allowed to talk about it or not but we have a close friend of our family that is going through the process of a breast cancer diagnosis. She is a mom and a wife and an incredible person that has played a major role in our lives. It just kills me that she is having to walk this path. I am just praying that the prognosis is good. I don't really have much else to say on the subject right now. I just felt like talking about it. I just wanted her to know that we are continuing to think about her and her family.
I have a multifaceted purpose today.
Thursday, October 16, 2008
A Surprisingly Good Day
I still don't have any results from the CT. I consider that a good thing. What I can tell you though, is that yesterday could not have gone any better. I mean if you are going to have to have a child with cancer, if she is going to have to be scanned every quarter, if she is going to have to have an IV, and if you are going to have to wait for hours on end; then I don't think you could have a better day. It went absolutely perfectly. The timing was good. Everybody was friendly - as always. Sydney was chipper. Mom was chipper. I was no goofier than usual. It was just a good day for scanning. I guess I am happiest of all that I did not receive a phone call yesterday afternoon with bad news.
Sydney was her usual stellar self. In fact, she was downright fun. She was even fun while she was getting no less that two stabs to get her IV in place. So, okay, it would have been a better day if she only had to have one poke. But honestly, these days and with those poor little spidery chemo veins, I consider just getting the IV in place a success. She was a champ. We were even able to squeeze out 20 cc of blood to send down to Houston. That is usually quite a challenge. She is rarely that juicy. So, as you can see, if you are going to have to go through all that, it really was a complete success.
First thing this morning we have Sydney's MIBG scan. Am I nervous? Is there any other way to be? Of course, I am. For better or worse though, by about 8:45 AM I will have a really good idea of where we stand. You may remember that I have no talent when it comes to reading an MIBG scan. That is still true. However, there are a few areas of concern and I will be watching closely for those. Judging by my past experience with MIBG I am pretty sure that I will still assume that her entire body is full of neuroblsatoma until I get the call from Dr. Eames.
So, a quick funny story: Yesterday Ainsley was off from school. It was a holiday for our little princess from her Jewish day care. She spent the morning running errands with DeeDee while we were with Sydney. All very normal stuff. DeeDee brought her to our house for lunch just before her nap. Ainsley was tired. None the less, DeeDee pulled out a lunch bag from the refrigerator which contained the lunch that Lynley had so carefully made for that morning. As DeeDee pulled each item from the bag she explained to Ainsley what it contained. "A peanut butter and jelly sandwich, some yogurt, grapes, and graham crackers." Ainsley became down right indignant. "No, those are not graham crackers. Those are Ainsley crackers."
My twerps. Aren't they awesome.
I love my purpii.
Still purposefully praying for clean scans.
Sydney was her usual stellar self. In fact, she was downright fun. She was even fun while she was getting no less that two stabs to get her IV in place. So, okay, it would have been a better day if she only had to have one poke. But honestly, these days and with those poor little spidery chemo veins, I consider just getting the IV in place a success. She was a champ. We were even able to squeeze out 20 cc of blood to send down to Houston. That is usually quite a challenge. She is rarely that juicy. So, as you can see, if you are going to have to go through all that, it really was a complete success.
First thing this morning we have Sydney's MIBG scan. Am I nervous? Is there any other way to be? Of course, I am. For better or worse though, by about 8:45 AM I will have a really good idea of where we stand. You may remember that I have no talent when it comes to reading an MIBG scan. That is still true. However, there are a few areas of concern and I will be watching closely for those. Judging by my past experience with MIBG I am pretty sure that I will still assume that her entire body is full of neuroblsatoma until I get the call from Dr. Eames.
So, a quick funny story: Yesterday Ainsley was off from school. It was a holiday for our little princess from her Jewish day care. She spent the morning running errands with DeeDee while we were with Sydney. All very normal stuff. DeeDee brought her to our house for lunch just before her nap. Ainsley was tired. None the less, DeeDee pulled out a lunch bag from the refrigerator which contained the lunch that Lynley had so carefully made for that morning. As DeeDee pulled each item from the bag she explained to Ainsley what it contained. "A peanut butter and jelly sandwich, some yogurt, grapes, and graham crackers." Ainsley became down right indignant. "No, those are not graham crackers. Those are Ainsley crackers."
My twerps. Aren't they awesome.
I love my purpii.
Still purposefully praying for clean scans.
Wednesday, October 15, 2008
Scan Week Begins
I honestly do not know whether I can actually justify calling them scan weeks any more. I mean, the way we have diced up the scans it really isn't an entire week of activities any longer. Let's just hope we keep it that way! Regardless, this morning marks the beginning. Sydney has now filled herself up with enough SSKI to protect her thyriod and is ready for her MIBG injection today. The sequence of events should be something like this. We will arrive at the hospital at about 8:00 AM for registration. By about 8:30 AM she should begin to chug the contrast. She will get to do this for roughly 2 hours. In the meantime, we will also be trying to get an IV placed. She will need that on 3 separate occasions today. Her first letting will be when we drain approximately 20 cc of blood which needs to be sent down to Houston. This is for some additional follow up testing associated with the vaccine trial. The next use will be for the IV contrast that they push during the CT scan. I really have no idea when that is scheduled. However, if we are drinking contrast between 8:30 AM and 10:30 AM, I am guessing that she will be receiving the CT sometime between 11:00 AM and 1:00 PM. All of this fun will be followed by the MIBG injection which will happen sometime after the CT scan. If all goes well, we will pull her IV, make a stop by the gift shop (bribery), grab a bite to eat, and head home. That is a perfect case scenario.
So, what am I worried about today? Does everything count? First, and foremost I am praying that we see no solid tumors. That is a obviously a biggy. Secondly, I am really, really, really hoping not to see any enlarged or questionable lymph nodes. I am praying for a nice clean scan with just the usual comments on her undersized kidney (due to neuroblastoma) and her sinuses. If I may even be so bold, I would also hope to see some improvement in her sinuses as I have spent the last 6 months pumping her full of a 3 drug combination to get them cleared up.
Everyone always asks - when do you expect to get the results? Well, I hope not to get them today. That is too fast. When we get them that quickly it seems that is always a sign of bad news. It would be reasonable to hear something tomorrow after the MIBG scan. However, I am guessing that Friday would probably be the most reasonable time to hear something.
Well, I had best be off. The rugrats are starting to scurry. Graham has already commandeered the remote and turned on SpongeBob. From the sounds of the thumps coming down the stairs I am guessing that Ainsley is only seconds behind. I have a mountain of email (as usual) and am in charge of getting Sydney to the hospital by 8:00 AM. It is time to get moving.
I am worried but we will just keep putting one foot in front of the other.
We are purposefully watching and waiting.
So, what am I worried about today? Does everything count? First, and foremost I am praying that we see no solid tumors. That is a obviously a biggy. Secondly, I am really, really, really hoping not to see any enlarged or questionable lymph nodes. I am praying for a nice clean scan with just the usual comments on her undersized kidney (due to neuroblastoma) and her sinuses. If I may even be so bold, I would also hope to see some improvement in her sinuses as I have spent the last 6 months pumping her full of a 3 drug combination to get them cleared up.
Everyone always asks - when do you expect to get the results? Well, I hope not to get them today. That is too fast. When we get them that quickly it seems that is always a sign of bad news. It would be reasonable to hear something tomorrow after the MIBG scan. However, I am guessing that Friday would probably be the most reasonable time to hear something.
Well, I had best be off. The rugrats are starting to scurry. Graham has already commandeered the remote and turned on SpongeBob. From the sounds of the thumps coming down the stairs I am guessing that Ainsley is only seconds behind. I have a mountain of email (as usual) and am in charge of getting Sydney to the hospital by 8:00 AM. It is time to get moving.
I am worried but we will just keep putting one foot in front of the other.
We are purposefully watching and waiting.
Tuesday, October 14, 2008
A breath of fresh air
First off, I want to thank everyone for the messages and massive amounts of email. I can not tell you how many emails I received describing some type of ailment that explained Sydney's symptoms perfectly. I was truly relieved at the volumes of messages that I received. Even though I write in this diary on the internet everyday I somehow forget to realize that anyone actually reads my words. Some days I think we all feel a little alone in this world but it sure feels nice to be propped up with support when you really need it. In short, it seems that there are many viruses going around that explain symptoms. It was good to be reminded of that.
I am also pretty sure that you know me well enough to know that although I do feel better I still find myself concerned. They don't call neuroblastoma the "great masquerader" for nothing. I have gotten better. I generally don't freak out with any single symptom. It is only when the evidence begins to feel overwhelming that I let my juices get flowing. Regardless, I want to personally thank everyone for the reminder that this can still be absolutely, positively nothing.
So, what did yesterday leave us with? Well, all of the kiddos were out of school and Mommy stayed home from work with them. I spent the majority of my day typing away on the couch. It was nice having some noise around the house. I had forgotten how quiet it was without them. It was nice to have interruptions and the pitter pat of little footsies running around. Sydney started out the morning complaining about how badly she felt. I was mildly sympathetic but explained how sad I was that she was going to have to stay in bed all day if she was that sick. Oddly enough she never complained for the rest of the day. Her appetite was back and she spent much of the day in normal activities. There were trips to the park, hops on the trampoline, and races around the yard. All of this was without any complaint or any visible signs of stress or discomfort. This too, gave me reason to feel a bit better. I am anxious to see how she feels today but I am already predicting that I will hear how awful she feels this morning. I hope I am wrong. It would not be the first time.
This day of purpose was much more tolerable.
I am also pretty sure that you know me well enough to know that although I do feel better I still find myself concerned. They don't call neuroblastoma the "great masquerader" for nothing. I have gotten better. I generally don't freak out with any single symptom. It is only when the evidence begins to feel overwhelming that I let my juices get flowing. Regardless, I want to personally thank everyone for the reminder that this can still be absolutely, positively nothing.
So, what did yesterday leave us with? Well, all of the kiddos were out of school and Mommy stayed home from work with them. I spent the majority of my day typing away on the couch. It was nice having some noise around the house. I had forgotten how quiet it was without them. It was nice to have interruptions and the pitter pat of little footsies running around. Sydney started out the morning complaining about how badly she felt. I was mildly sympathetic but explained how sad I was that she was going to have to stay in bed all day if she was that sick. Oddly enough she never complained for the rest of the day. Her appetite was back and she spent much of the day in normal activities. There were trips to the park, hops on the trampoline, and races around the yard. All of this was without any complaint or any visible signs of stress or discomfort. This too, gave me reason to feel a bit better. I am anxious to see how she feels today but I am already predicting that I will hear how awful she feels this morning. I hope I am wrong. It would not be the first time.
This day of purpose was much more tolerable.
Monday, October 13, 2008
Fear is not a funny thing.
Good morning. This weekend has been a little nerve racking. For better or worse (and I mean that literally) this is scan week. As of Saturday we began the process of getting ready for scans. We started Sydney on SSKI (Potassium Iodide) to protect her thyroid glands. This is all pretty normal and routine stuff. We have this down. What it seems like we are never ready for is -Sydney showing signs of funkiness - and boy is she. If I am going to be real honest with the world, I have not been as scared of the disease in Sydney in quite some time. In fact, I think it was the improvement in the last set of scans that got be truly breathing easier. Regardless, I really haven't been thinking of neuroblastoma in Sydney. I have been thinking how cute she was when she played with her brother and sister, how proud I was of her at school, and how twerpful she could be. I have been thinking of normal stuff and not consumed with the fear. It has been a nice road. It is hope for everyone out there that after treatment there is hope for some since of carefree normalcy. However, for the moment at least, it is gone for me.
Sydney has stuff. When I say stuff I also mean more than one stuff which is one of the things that really has gotten the blood to begin boiling. Sydney has had so many different ailments as of late that it is difficult to remember them all. I can remember some sporadic low grade fevers in the last few weeks. I can also remember that she spent the better part of 3 days last week limping because her heal hurt. I pretty much brushed those two events off. After all, both Lynley , Ainsley and DeeDee were sick at about the same time. That alone could explain the fevers. The fact that her heel hurt was a little more disconcerting but I have hurt my heel on many occasions and know exactly how that can happen. I was pleased when the pain left near the end of the week and that was enough for me to begin to breathe more easily. Starting after school on Friday this all began to multiply and it is what now has Lynley and I in a pretty skittish state.
Sydney's ailments have multiplied. It is now her ankle that hurts. Yes, the ankle on the same leg that the heel hurt as of last week. She has also complained that her stomach hurt and I have seen her appetite fall off drastically. In fact, after not eating dinner last night she claims to have thrown up. Headaches have also come and gone this weekend. I think the most obvious sign that something is truly amiss is the fact that she went to bed early last night while the other kids were playing in our bedroom. The odd thing about all of this is how active she has continued to be through much of this. Her bright demeanor and frolicky play always make you wonder if all of these ailments are real or an illusion. I guess that is what makes her early trip to bed all that more ominous and scary.
I am not pulling any punches here. We are scared.
I can hear every beat of my purpose.
Friday, October 10, 2008
Neuroblastoma Vaccines on video
For the last 3 years we have often been asked about the vaccine study that Sydney was on at Texas Children's. You may remember that I let on that one of the reasons that we were so interested in it was the fact that there had been some pretty significant responses. Better yet, a few of these responses were seen right before Sydney was scheduled to have the vaccine. While we may never know what effect this may or may not have had on Sydney (she had no detectable disease) we knew of many who had significant results. Over the years this trial has been tweaked several different times and has even received a new principal investigator. In fact, one of the major components (and scariest) of Sydney's experience, the lymphodepletion, is no longer part of the protocol. They have reduced doses, increased doses, and just about everything in between honing the treatment as they have gone along. I am happy to say that the trial is still an option for many kids and finally I have some information to share. At the CNCF's neuroblastoma conference this year, Dr. Chrystal Lewis presented information (and results) on many of the patients in two of the vaccine trials that they offer at Texas Children's. I have finally received the video and posted it on the CNCF website. Information on both the Nestle (Sydney's) vaccine and the Cheesit (CHESAT) vaccine trials are covered. They can be found here:
http://www.nbhope.org/blogs/neuroblastoma_conference_videos_2007/archive/2008/10/09/cncf-2008-cell-and-vaccine-therapies-for-neuroblastoma-at-texas-children-s-hospital.aspx
Go ahead! View it. It is interesting stuff.
Finally, I also want to remind everyone of the concert tonight at the Ridglea Theater in Fort Worth starting at 7:00 PM. Ticket proceeds will benefit the Children's Neuroblastoma Cancer Foundation. Come out and have a great time. And, yes, I will be out past my bed time.
I have my purpose to keep me awake.
http://www.nbhope.org/blogs/neuroblastoma_conference_videos_2007/archive/2008/10/09/cncf-2008-cell-and-vaccine-therapies-for-neuroblastoma-at-texas-children-s-hospital.aspx
Go ahead! View it. It is interesting stuff.
Finally, I also want to remind everyone of the concert tonight at the Ridglea Theater in Fort Worth starting at 7:00 PM. Ticket proceeds will benefit the Children's Neuroblastoma Cancer Foundation. Come out and have a great time. And, yes, I will be out past my bed time.
I have my purpose to keep me awake.
Thursday, October 9, 2008
Different ways of helping
Yet another day that I have a million things that I need to talk about regarding neuroblastoma and childhood cancer. I spent the bulk of yesterday on the phone. Today will be much the same. I have been talking to several families who have children in dire straights and are desperately looking for answers. This is both my least favorite activity and my favorite. I hate the fact that I am talking to families that are literally fighting for their child's life. I can hear and feel the desperation in their voices. To this day, every conversation reverberates down to my core as I remember that feeling all to well. I can only imagine that it is that much worse when you don't have the luxury of information. I am not saying that I have the answers. I don't. But, I do have a finger on the pulse of what is available and a knack for knowing how a bunch of treatments could potentially fit together in a pretty reasonable treatment plan that has a chance for success. In this way, I know which questions to tell them to ask and who to ask them of. It is in this sense of providing options in what appears to be both a vacuum of information and yet an overload that this becomes one of my favorite activities. I can help another family make sense when their world has been crushed. It is on these days that I feel that I have made a difference. I know that I can provide many of these families with direction but I don't honestly think that is the true value. I think it is just the fact of being there and finding some way to sustain a little hope and confidence in a world that seems devoid. Assurance that you are doing the best for your child is strong medicine.
Now, onto a completely different subject. You know, you never know who is going to try and step up and make a difference in your life. Unfortunately, you also never know when they are going to do it until the very last minute. This is one such instance. I had a call a few days ago from a gentleman who was putting a country music concert together. He wanted to use the concert to benefit Lunch for Life and the Children's Neuroblastoma Cancer Foundation. Since then he has convinced 5 bands to give up a portion of their proceeds and participate in a concert to benefit neuroblastoma.
Here is the rub.
The concert is tomorrow night at the Ridglea Theater in Fort Worth, TX.
So, on very short notice I am inviting you to attend this country music concert. As I mentioned the night will include music by five bands and it will run from 7:00 PM until mid night. I understand if you can't stay for the whole thing. As I established yesterday that is way past my bed time. However, if you would come out and support the cause and listen to some great music that would be truly wonderful. Here is the information:
Ridglea Round-Up
Friday, October 10th @ The Ridglea Theater
Show starts at 7pm til 12am and ticket prices are $10 for 21 & up and $13 for under 21
Information on the bands that will be playing.
http://www.myspace.com/geraldsuggs 7 - 7:45 pm
http://www.myspace.com/jodyjones 8 - 8:45 pm
http://www.myspace.com/SkipPulligBand 9 - 9:45 pm
http://www.myspace.com/jordanmycoski 10- 10:45 pm
Http://www.myspace.com/riverwoodtexas 11 -12:00 pm
Again, a portion of the sales from each ticket will go to benefit the Children's Neuroblastoma Cancer Foundation. Please stop by after dinner and help us have a great time.
Purpose comes in a variety of different ways.
Now, onto a completely different subject. You know, you never know who is going to try and step up and make a difference in your life. Unfortunately, you also never know when they are going to do it until the very last minute. This is one such instance. I had a call a few days ago from a gentleman who was putting a country music concert together. He wanted to use the concert to benefit Lunch for Life and the Children's Neuroblastoma Cancer Foundation. Since then he has convinced 5 bands to give up a portion of their proceeds and participate in a concert to benefit neuroblastoma.
Here is the rub.
The concert is tomorrow night at the Ridglea Theater in Fort Worth, TX.
So, on very short notice I am inviting you to attend this country music concert. As I mentioned the night will include music by five bands and it will run from 7:00 PM until mid night. I understand if you can't stay for the whole thing. As I established yesterday that is way past my bed time. However, if you would come out and support the cause and listen to some great music that would be truly wonderful. Here is the information:
Ridglea Round-Up
Friday, October 10th @ The Ridglea Theater
Show starts at 7pm til 12am and ticket prices are $10 for 21 & up and $13 for under 21
Information on the bands that will be playing.
http://www.myspace.com/geraldsuggs 7 - 7:45 pm
http://www.myspace.com/jodyjones 8 - 8:45 pm
http://www.myspace.com/SkipPulligBand 9 - 9:45 pm
http://www.myspace.com/jordanmycoski 10- 10:45 pm
Http://www.myspace.com/riverwoodtexas 11 -12:00 pm
Again, a portion of the sales from each ticket will go to benefit the Children's Neuroblastoma Cancer Foundation. Please stop by after dinner and help us have a great time.
Purpose comes in a variety of different ways.
Wednesday, October 8, 2008
Way too much!
Good morning! I would be lying if I did not tell you that I was still recovering. I know that sounds a bit ridiculous for attending a summit meeting between 9:00 AM and 4:00 PM. That is because it is and I have learned a very valuable lesson about flight planning. My major issue was my flight tp which arrived in Philadelphia well after midnight. To a normal person that may not make a big deal. But, we also mustn't forget. I am not normal. I wake up early. 1:00 AM and 2:00 AM are not late nights for me. Those are early mornings and it effectively made my body feel like I skipped a day. I have never slept worse. I was jet lagged by a 3 hour flight - absolutely ridiculous - and my 1 hour time change left me wondering whether it was still day or night - worse than absolutely ridiculous. For someone that travels as much as I, this really should not have been an issue.
The great news is that the Childhood Cancer Summit was great. I am always a bit curious going into situations like this. I am interested in understanding the perspectives and drives of other charities. The summit was made up of about 20 different childhood cancer charities and from what I understand there were almost 40 people in attendance. We represented a variety of childhood cancers but from my perspective neuroblastoma certainly had the biggest presence. Over half of the charities attending were started as a result of a child with neuroblastoma. The entire purpose of the meeting was to find ways for our organizations to work together to further our common cause. I am happy to report that it appeared that everyone in attendance shared this common goal. This was no little thing either. We are not talking about a room of stuffy suits that were all looking to serve their own interests. We are talking about a group of very passionate people with a genuine desire to create substantial global change. This group was heavily committed to making a splash and seemed to have no problem putting personal beliefs and views aside to help the common good. This is meaningful. There have been attempts by other organizations to do this type of thing in the past but it has always turned into a battle of the egos topped off with a shield of self protection and a sword of self interest - so much so that it seemed nothing real was ever getting done. There was no real collaboration. There was no real joint effort.
This was different!
I don't know exactly what the difference was but I can tell you that 95% of these people had a deep personal connection to childhood cancer which transcended the organization that they were affiliated with. I don't know how to say other than to say - they got it.. There is a commit to work together for the common good.
So, what does all of this mean?
Well, we started working. We brainstormed in every different area imaginable. We tried to identify all of the different ways we could work together towards our common goal of defeating childhood cancer. Before we got through the room we had already identified a list of ways that we could work together that was almost 6 pages long. We then divided this list into 4 common areas for discussion and began the process of identifying the "low hanging fruit" (the things we could do together right now) We also identified many of the items that would require further work and discussion to get consensus on.
As you might expect I was in on the research discussions. The ultimate question was "What can we do together to help hasten research. What are the issues? What are the goals? How do we help to speed up the process? How do we help reduce duplication? In the end, we identified about 6 items that we could move forward on right now.
By the end of the meeting we had a great list of actionable items that I think we can make progress on. We volunteered leaders in each of our functional areas to carry the torch to get things moving before our next meeting in the Spring. We have active committees and I am hopeful that we will truly see some substantive change in the coming months. Collectively, there is no doubt in my mind that this group can truly create change in childhood cancer.
It was an honor and a privilege to participate.
Finally, I am happy to tell you that my children all survived my absence. However, they are certainly worse for wear. Sydney is walking with a limp (I am obviously hoping for a bruised heel) and Ainsley is still a little bit funky. She is not technically sick. However, she is also not well. I can't really say what is going on other than to say that something is amiss. The whiny gauge tells me that something is wrong. She is still not herself and she doesn't look it.
Finally, we need prayers for two of our neuroblastoma families at Cook's. Both Ajla and Lexi received horrible news this week. Ajla's disease has taken off - almost literally exploded. Her liver is almost completely compromised by neuroblastoma and it seems that new tumors are growing rapidly in her skull. They have discussed putting her in a coma to help with the pain - which is intense. Her mother fears that she will not make it home again. It is a gut-wrenching, heart-tearing time for this family. Lexi's family found out her relapsed disease has progressed. They are now frantically searching for alternatives across the country. This is a tremendous burden on her single mother. It is another horribly sad and stressful time for many of our friends at Cook's. Need I mention how much I hate this damn disease.
Well today I must run. This morning I have a meeting to work our national awareness campaign, followed by a conference call with the NCI, and then finally this afternoon another conference call with the NANT. It will be a busy day.
No matter how busy I am my friends Ajla and Lexi will be in my heart, mind, and prayers.
They are all of our purpose.
The great news is that the Childhood Cancer Summit was great. I am always a bit curious going into situations like this. I am interested in understanding the perspectives and drives of other charities. The summit was made up of about 20 different childhood cancer charities and from what I understand there were almost 40 people in attendance. We represented a variety of childhood cancers but from my perspective neuroblastoma certainly had the biggest presence. Over half of the charities attending were started as a result of a child with neuroblastoma. The entire purpose of the meeting was to find ways for our organizations to work together to further our common cause. I am happy to report that it appeared that everyone in attendance shared this common goal. This was no little thing either. We are not talking about a room of stuffy suits that were all looking to serve their own interests. We are talking about a group of very passionate people with a genuine desire to create substantial global change. This group was heavily committed to making a splash and seemed to have no problem putting personal beliefs and views aside to help the common good. This is meaningful. There have been attempts by other organizations to do this type of thing in the past but it has always turned into a battle of the egos topped off with a shield of self protection and a sword of self interest - so much so that it seemed nothing real was ever getting done. There was no real collaboration. There was no real joint effort.
This was different!
I don't know exactly what the difference was but I can tell you that 95% of these people had a deep personal connection to childhood cancer which transcended the organization that they were affiliated with. I don't know how to say other than to say - they got it.. There is a commit to work together for the common good.
So, what does all of this mean?
Well, we started working. We brainstormed in every different area imaginable. We tried to identify all of the different ways we could work together towards our common goal of defeating childhood cancer. Before we got through the room we had already identified a list of ways that we could work together that was almost 6 pages long. We then divided this list into 4 common areas for discussion and began the process of identifying the "low hanging fruit" (the things we could do together right now) We also identified many of the items that would require further work and discussion to get consensus on.
As you might expect I was in on the research discussions. The ultimate question was "What can we do together to help hasten research. What are the issues? What are the goals? How do we help to speed up the process? How do we help reduce duplication? In the end, we identified about 6 items that we could move forward on right now.
By the end of the meeting we had a great list of actionable items that I think we can make progress on. We volunteered leaders in each of our functional areas to carry the torch to get things moving before our next meeting in the Spring. We have active committees and I am hopeful that we will truly see some substantive change in the coming months. Collectively, there is no doubt in my mind that this group can truly create change in childhood cancer.
It was an honor and a privilege to participate.
Finally, I am happy to tell you that my children all survived my absence. However, they are certainly worse for wear. Sydney is walking with a limp (I am obviously hoping for a bruised heel) and Ainsley is still a little bit funky. She is not technically sick. However, she is also not well. I can't really say what is going on other than to say that something is amiss. The whiny gauge tells me that something is wrong. She is still not herself and she doesn't look it.
Finally, we need prayers for two of our neuroblastoma families at Cook's. Both Ajla and Lexi received horrible news this week. Ajla's disease has taken off - almost literally exploded. Her liver is almost completely compromised by neuroblastoma and it seems that new tumors are growing rapidly in her skull. They have discussed putting her in a coma to help with the pain - which is intense. Her mother fears that she will not make it home again. It is a gut-wrenching, heart-tearing time for this family. Lexi's family found out her relapsed disease has progressed. They are now frantically searching for alternatives across the country. This is a tremendous burden on her single mother. It is another horribly sad and stressful time for many of our friends at Cook's. Need I mention how much I hate this damn disease.
Well today I must run. This morning I have a meeting to work our national awareness campaign, followed by a conference call with the NCI, and then finally this afternoon another conference call with the NANT. It will be a busy day.
No matter how busy I am my friends Ajla and Lexi will be in my heart, mind, and prayers.
They are all of our purpose.
Monday, October 6, 2008
Purpose in Philly
Surprise, surprise, surprise. I am in Philadelphia. After spending a wonderful weekend at home with the family I flew out late last night. I am here for the Children's Cancer Charity Summit. This meeting is attended by a group of about 40 individuals from almost 20 children's cancer charities. Our goal is to find different ways to collaborate on several different fronts. This is a first so it ought to be very, very interesting. Unfortunately, I had better run. I have a very busy day ahead.
With purpose in Philly
With purpose in Philly
Friday, October 3, 2008
Sickness - Real, Imagined, or Both
Good morning! Yesterday, Sydney went back to school. She seemed perfectly well. Later in the afternoon when I picked her up I would find out that she spent some time with the school nurse. At this point, I am wondering what we are really dealing with. I am less concerned with the eye at this point. It seems she finally remembered that someone poked her in the eye with a pencil. I don't know whether that is the case but it at least gives me something to blame the anomaly on. Her frequent visits to the school nurse, though, still raise suspicion. I am wondering if they are due to something else. It seems that it may seem like a safe haven for her. It is becoming a stress response. In my eyes, anyway, it seems that whenever she gets stressed out she ends up taking a break in the nurses office. There she is comforted and coddled. It makes perfect sense. The questions are: Am I right? and What can we do about it?
I have tried explaining to her that we only need to go to the nurse when we are "really" sick (with the emphasis on real) I left it at that and we will see how it works.
Ironically, Ainsley just stomped down the stairs. It appears she has a 100.6 degree fever. I have to run.
It seems my purpose will have company today.
I have tried explaining to her that we only need to go to the nurse when we are "really" sick (with the emphasis on real) I left it at that and we will see how it works.
Ironically, Ainsley just stomped down the stairs. It appears she has a 100.6 degree fever. I have to run.
It seems my purpose will have company today.
Thursday, October 2, 2008
A trip to Dr. Debbie
Sometimes, I feel like a genuine broken record. This week has been another utterly hectic week. It was capped off with a call from the school nurse with a report that Sydney had scored an official fever. The school still cracks me up. Anything over 100 degrees and they send you home. From what I understand Sydney was at 100.1. You see, in my mind, that doesn't really count as a fever. In fact, when Sydney was in treatment we weren't even allowed to call the doctor until her temp was over 101.5 - and that was when she was neutropenic.
None the less, I hopped in my car and picked her up. It just so happens that the child across from her had been diagnosed with strep the day before. Sydney complained that her throat also hurt but I must admit that I was a bit skeptical. She was really "sicking" it up pretty good. On the way home we stopped by Dr. Debbie's for a strep test, a once over, and a look at her eye. By the time we arrived her temperature had corrected itself and her temp was down to 99.2. Thankfully the quick strep test came back negative as well. Dr. Debbie gave us an antibiotic, just in case, and we will see if any cultures grow before Friday. Generally, Sydney looked pretty good with the exception of her arms and legs which were covered with bug bites and scabs. She has got to get out of the habit of scratching those itchy bug bites. It has been an ongoing challenge for us throughout the summer.
The only kind of strange thing that surfaced during our chat with Dr. Debbie was Sydney's eye. Her left eye has about a half centimeter circle of broken blood vessels. Apparently this can occur with a bad coughing episode or throwing up. Although Sydney has had a cough, it was not something that I thought was bad enough to cause this. Of course, as parents of a child with neuroblastoma we have that looming thought in the back of our minds. Could this somehow be related to neuroblastoma? As much as I know, it is probably not in any way related but my mind still can not help from wandering there. Isn't fear a funny thing. For the life of me I can not think of how neuroblastoma would cause broken blood vessels in the eye yet it is the first place my mind floats. Interesting.
Finally, we still have room for some main dishes and sides for the Lunch for Life Cookbook. I am editing the book as we speak. Please consider downloading the PDF file in the link below and submitting another recipe or two. We could use some more and we can use them fast.
http://www.nbhope.org/files/folders/lunch_for_life/entry52136.aspx
Well with that I am off. Purpose awaits.
None the less, I hopped in my car and picked her up. It just so happens that the child across from her had been diagnosed with strep the day before. Sydney complained that her throat also hurt but I must admit that I was a bit skeptical. She was really "sicking" it up pretty good. On the way home we stopped by Dr. Debbie's for a strep test, a once over, and a look at her eye. By the time we arrived her temperature had corrected itself and her temp was down to 99.2. Thankfully the quick strep test came back negative as well. Dr. Debbie gave us an antibiotic, just in case, and we will see if any cultures grow before Friday. Generally, Sydney looked pretty good with the exception of her arms and legs which were covered with bug bites and scabs. She has got to get out of the habit of scratching those itchy bug bites. It has been an ongoing challenge for us throughout the summer.
The only kind of strange thing that surfaced during our chat with Dr. Debbie was Sydney's eye. Her left eye has about a half centimeter circle of broken blood vessels. Apparently this can occur with a bad coughing episode or throwing up. Although Sydney has had a cough, it was not something that I thought was bad enough to cause this. Of course, as parents of a child with neuroblastoma we have that looming thought in the back of our minds. Could this somehow be related to neuroblastoma? As much as I know, it is probably not in any way related but my mind still can not help from wandering there. Isn't fear a funny thing. For the life of me I can not think of how neuroblastoma would cause broken blood vessels in the eye yet it is the first place my mind floats. Interesting.
Finally, we still have room for some main dishes and sides for the Lunch for Life Cookbook. I am editing the book as we speak. Please consider downloading the PDF file in the link below and submitting another recipe or two. We could use some more and we can use them fast.
http://www.nbhope.org/files/folders/lunch_for_life/entry52136.aspx
Well with that I am off. Purpose awaits.
Wednesday, October 1, 2008
Scramble for a Cure
On Friday, October 24th, 2008 Jeffrey Cummings, a friend of Grayson Bradshaw's father, is hosting a golf tournament at The Golf Club at Castle Hills to benefit the Children’s Neuroblastoma Cancer Foundation. The best part is that you can play for free.
Grayson is from The Colony, TX. He was diagnosed with Stage IV Neuroblastoma on November 8, 2006 at the age of 2. He has undergone 8 cycles of chemotherapy, surgeries, 2 stem cell transplants (causing him to fight a serious fungal infection), 15 cycles of radiation, and Accutane. In January of 2008, calcified spots that were thought to be dead started showing signs of growth. He and his family traveled to Sloan Kettering for scans and a biopsy. Lymph nodes were found to be positive for Neuroblastoma. Grayson had a significant abdominal surgery August 1st at Sloan Kettering. The surgery and high dose chemotherapy kept him in the hospital for a month. He will follow with another high dose chemotherapy and hopefully undergo antibody treatments at Sloan Kettering.
Event Name: Scramble for a Cure
Benefitting: Lunch for Life and Children's Neuroblastoma Cancer Foundation
Location: The Golf Club at Castle Hills
Date/ Time: 10/24/200801:30 PM - 05:30 PM
Address: 699 Lady of the Lake Blvd.Lewisville, TXUnited States
Phone: 972-899-7400
There are a few ways in which you can help.
- Play in the event as a single or build a 4-some. You can either contribute $150/person or play for free, and receive PGA Tour Superstore credit, by helping raise a little money by sending around a pre-drafted letter to friends and family (see website for details).
- If you’re not a golfer, you can help by sponsoring me in any an amount you’re comfortable with (there are no minimums).
- Send this to everyone you know.
http://www.miraclegolfconcepts.com/eventdetail.php?id=292
Below you can find the tournament brochure which includes information on Lunch for Life, the tournament, and Grayson. We’re having to limit the field to 120 players, so please sign up sooner than later if you’d like to play. There will be plenty of give-aways, contests, dinner, and a silent auction with numerous autographed pieces of memorabilia.
Lunch for Life Tournament Brochure- 2008.pdf - Adobe Acrobat Professional.pdf
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