Still no new news on our little neuroblastoma FISHing expedition. Frankly, I am starting to get a little nervous now. I had been under the impression that we would hear something on Monday and here it is Thursday with no new news. I finally broke down and emailed Dr. Russell yesterday afternoon to see if she had heard anything. You may think that I would have mentioned it in passing during all of my conversations with her this week, but I just did not feel comfortable with it. I genuinely try to keep my CNCF business life separate from my Sydney paranoia life. So, regardless, I hope to hear back today and, for God's sake, I pray that it is clear.
I still have not made much sense of the spot in her arm. In fact, if I had to be honest, after Dr. Russell's presentation on bone metastases I would have to believe even more strongly in the possibility of this still being neuroblastoma. I know, I know we just found that the biopsy did not show neuroblastoma. Well, my answer to that is that we knew going in that the likelihood of finding neuroblastoma was probably pretty low. We do have fairly high confidence that they hit the right area on the biopsy but there are no guarantees. I know I sound like a broken record but there is still something in her arm and nobody has given me a reasonable possible diagnosis that is not cancer or neuroblastoma, specifically. All I continue to hear is "normal kids don't get bone scans and MRIs so this could be just a normal process. We just don't know." That is all fine and dandy but when you have an orthopedic oncologist screaming that it is cancer that argument just doesn't hold much water.
By the way, for those of you that missed the seminar on Neuroblastoma Bone (and Bone Marrow) Metastases the other day, a video of the presentation can be found here:
http://www.cncf-childcancer.org/cs/blogs/under_the_microscope/archive/2008/03/19/21615.aspx
So, in a nutshell, that is why I remain nervous. I am anxiously awaiting this last result so that we can begin again the process of developing a plan. Right now, I don't have one. We need to get the result so we can move forward and make some more decisions about how we are going to proceed. If the consensus is to wait - fine! I just need to know what to do.
Purpose and paranoia - they can make strange bedfellows.
Thursday, March 20, 2008
Wednesday, March 19, 2008
5:42 AM 3/19/2008
Good morning! There isn't much to report on the kiddo front. Dr. Russell unfortunately did not offer any reports on Sydney's FISHing expedition. The training session on neuroblastoma bone metastasis did, however, go very well. Being the first time, with a brand new technology, and our first attempt at an online seminar I think it went very well. Oh sure, there were some technical glitches but it went really well. So far, the feedback that we received back was great. Now I just have to figure out what the next topic should be.
Yesterday was quite a rainy day. This left all of the twerplets a little stir crazy. When Lynley got home she rescued one of them from the insanity and took him to the store for some new shoes. As many of you know my son Graham has some issues. He is anal with a capital Daddy (I meant to say A) Of all of my children he continues to be the most sensitive soul. This "sensitivity" raised its head once again as they tried on shoes.
You see, it all began the day before. Lynley had the day off from work and decided to buy the boy some new super go fasties (shoes). She purchased Graham some handsome new tennis shoes. When Graham came home he absolutely fell in love with them. In fact, he carried them around all night and even slept with the shoe box. In the morning he tried them on. They were clearly too small and Lynley told him we would have to take them back to the store. Graham insisted that they fit just fine. His heart was broken. This sent his psyche into overload and he had a mental breakdown.
This was the reason they were back at the store. They needed to fit Graham properly so that we could restore his gentle mental state. The footometer had him measured at an 11. This is what Lynley had brought home the day before. They decided to start him with a 12. There has a good half an inch between his heel and the back of the shoe. They were clearly gi-normous. Graham, however, felt that they were down right perfect. Again, we had to pry him out of the shoes and try on a smaller size. The next size down was an 11.5. From all practical appearances these seemed to fit the bill. They were just big enough to give him some room to grow but not too big that he looked like he was speed skating when he walked. Lynley asked him to walk a few steps. He refused and very sweetly started balling. He demanded that the shoes were too small. Mind you, it was clear that they were not. He demanded that they did not feel right and, once again, his gentle psyche was in turmoil. Lynley bought the shoes and came back home. By the time they arrived home Graham had forgotten that he thought the shoes did not fit and spent the rest of the evening running around in his newly found love.
I did not get to put him to sleep last night as I had a CNCF board meeting but I am pretty sure that he tried to sleep in them. In the end a great tragedy was averted.
Sometimes I am amazed at how similar my purpii are to me.
Yesterday was quite a rainy day. This left all of the twerplets a little stir crazy. When Lynley got home she rescued one of them from the insanity and took him to the store for some new shoes. As many of you know my son Graham has some issues. He is anal with a capital Daddy (I meant to say A) Of all of my children he continues to be the most sensitive soul. This "sensitivity" raised its head once again as they tried on shoes.
You see, it all began the day before. Lynley had the day off from work and decided to buy the boy some new super go fasties (shoes). She purchased Graham some handsome new tennis shoes. When Graham came home he absolutely fell in love with them. In fact, he carried them around all night and even slept with the shoe box. In the morning he tried them on. They were clearly too small and Lynley told him we would have to take them back to the store. Graham insisted that they fit just fine. His heart was broken. This sent his psyche into overload and he had a mental breakdown.
This was the reason they were back at the store. They needed to fit Graham properly so that we could restore his gentle mental state. The footometer had him measured at an 11. This is what Lynley had brought home the day before. They decided to start him with a 12. There has a good half an inch between his heel and the back of the shoe. They were clearly gi-normous. Graham, however, felt that they were down right perfect. Again, we had to pry him out of the shoes and try on a smaller size. The next size down was an 11.5. From all practical appearances these seemed to fit the bill. They were just big enough to give him some room to grow but not too big that he looked like he was speed skating when he walked. Lynley asked him to walk a few steps. He refused and very sweetly started balling. He demanded that the shoes were too small. Mind you, it was clear that they were not. He demanded that they did not feel right and, once again, his gentle psyche was in turmoil. Lynley bought the shoes and came back home. By the time they arrived home Graham had forgotten that he thought the shoes did not fit and spent the rest of the evening running around in his newly found love.
I did not get to put him to sleep last night as I had a CNCF board meeting but I am pretty sure that he tried to sleep in them. In the end a great tragedy was averted.
Sometimes I am amazed at how similar my purpii are to me.
Tuesday, March 18, 2008
5:04 AM 3/18/2008
Good morning! I know, I played hooky yesterday. To make a long story short, I woke up with an excruciating headache yesterday morning and hid in the dark until about 6:30 AM before I became even remotely functional. I was incapable of walking into the bathroom, much less thinking about what I should write in the diary. By the time I had semi-recovered the kiddos were stirring and, low and behold, a new day had dawned.
It has been a busy couple of days. It all started on Friday with a photo shoot. The CNCF had its final day of shooting for its neuroblastoma awareness campaign and collection. Over the two day shoot Geno took some of the best pictures I have ever seen. To say that they are incredible is an understatement. The shoots themselves were quite fun. The kids had a lot of fun and we did as well. I am biased but I have to be honest, kids with neuroblastoma are just down right adorable. There wasn't an ugly one in the bunch.
As you would come to expect on any photo shoot with that many kids with cancer there was also high drama. Lukas, one of our youngest models, ended up in a surprise 10 hour surgery and Ayla, another one of our fellow neuroblastoma survivors, ended up in the ICU and was never able to even make the shoot (for obvious reasons). In fact, I spent as much time up at the hospital with the families on Friday as I did at the shoot. Over the last few days many have asked how the both of them are doing. Although I have been by several times I have not been able to see them. Both are in the ICU and I figure that if I don't see them out and about then they probably don't need to see me. So, in short, other than to here that they were probably going to be moving Lukas from ICU soon, that is about all I know.
The weekend was splendidly average and normal. In fact, we did absolutely nothing out of the norm. It was perfect. The urchins spent their time in the trees and rummaging around the backyard. Lynley did chores and I (very wisely) did exactly what I was told. Complete bliss.
Yesterday was time to play catch up on about 10 projects that I have up in the air. It was a busy day but nothing to write home about. I am happy to say that my headache did finally subside. The kids were all late starters. Getting back into the swing of things after spending a week on spring break is always a little tough. I am happy to report that the kids all made it back to school and to reality without incident. As is usual, Sydney and I came home from speech therapy to find the rugrats perched in the tree. For the next hour they hung in the tree as my wife and I chatted up the day and prepared for dinner. All in all, it was a pretty good day. I will certainly take it.
Today will be another busy day. At noon we will be having CNCF's online seminar on bone metastasis which will be the first of what I will hope will be an entire educational series for families. Dr. Heidi Russell will be providing an hour long presentation on the subject for everyone who wants to attend. It will be valuable information for anyone that wants to know how neuroblastoma metastasizes to the bone and how it is treated. More information on how to participate can be found here: https://www2.gotomeeting.com/register/402147690
That is about all I have time to report. As you can see things are truly and completely, well, swell. We are still waiting on the final results on Sydney's marrows. The last test that they were going to do was a fluorescence in situ hybridization (FISH) for NMYC - think of it as "FISH"ing for NMYC. Oh, that was bad. I have become way too nerdy with this stuff. Anyway, this is another very sensitive way to test for the presence of neuroblastoma. I imagine that Dr. Russell will hear something today. Isn't that convenient? This will be our last opportunity to discover neuroblastoma at this point - not that I want to.
Purpose is chugging along at a fast clip.
It has been a busy couple of days. It all started on Friday with a photo shoot. The CNCF had its final day of shooting for its neuroblastoma awareness campaign and collection. Over the two day shoot Geno took some of the best pictures I have ever seen. To say that they are incredible is an understatement. The shoots themselves were quite fun. The kids had a lot of fun and we did as well. I am biased but I have to be honest, kids with neuroblastoma are just down right adorable. There wasn't an ugly one in the bunch.
As you would come to expect on any photo shoot with that many kids with cancer there was also high drama. Lukas, one of our youngest models, ended up in a surprise 10 hour surgery and Ayla, another one of our fellow neuroblastoma survivors, ended up in the ICU and was never able to even make the shoot (for obvious reasons). In fact, I spent as much time up at the hospital with the families on Friday as I did at the shoot. Over the last few days many have asked how the both of them are doing. Although I have been by several times I have not been able to see them. Both are in the ICU and I figure that if I don't see them out and about then they probably don't need to see me. So, in short, other than to here that they were probably going to be moving Lukas from ICU soon, that is about all I know.
The weekend was splendidly average and normal. In fact, we did absolutely nothing out of the norm. It was perfect. The urchins spent their time in the trees and rummaging around the backyard. Lynley did chores and I (very wisely) did exactly what I was told. Complete bliss.
Yesterday was time to play catch up on about 10 projects that I have up in the air. It was a busy day but nothing to write home about. I am happy to say that my headache did finally subside. The kids were all late starters. Getting back into the swing of things after spending a week on spring break is always a little tough. I am happy to report that the kids all made it back to school and to reality without incident. As is usual, Sydney and I came home from speech therapy to find the rugrats perched in the tree. For the next hour they hung in the tree as my wife and I chatted up the day and prepared for dinner. All in all, it was a pretty good day. I will certainly take it.
Today will be another busy day. At noon we will be having CNCF's online seminar on bone metastasis which will be the first of what I will hope will be an entire educational series for families. Dr. Heidi Russell will be providing an hour long presentation on the subject for everyone who wants to attend. It will be valuable information for anyone that wants to know how neuroblastoma metastasizes to the bone and how it is treated. More information on how to participate can be found here: https://www2.gotomeeting.com/register/402147690
That is about all I have time to report. As you can see things are truly and completely, well, swell. We are still waiting on the final results on Sydney's marrows. The last test that they were going to do was a fluorescence in situ hybridization (FISH) for NMYC - think of it as "FISH"ing for NMYC. Oh, that was bad. I have become way too nerdy with this stuff. Anyway, this is another very sensitive way to test for the presence of neuroblastoma. I imagine that Dr. Russell will hear something today. Isn't that convenient? This will be our last opportunity to discover neuroblastoma at this point - not that I want to.
Purpose is chugging along at a fast clip.
Friday, March 14, 2008
Thursday, March 13, 2008
1:53 PM 3/13/2008
Negative! Can you believe it? I guess I can a little bit. We knew going into this that an inconclusive result was possible. We even expected for the sample to be tainted. What I am ecstatic to report was that it was neither. The marrow and the 5 samples of bone were all perfectly healthy and normal. I guess that they could have missed the spot on the bone scan but, the MRI showed such a diffuse pattern on we would have had to assume that we would have at least picked up an inkling of abnormality. I am amazed and incredibly happy. We don't really know where to go from here. I am sure there will be further discussions but, for the time being, we can all breath. This afternoon we get to play out in the yard. We have been given an incredible gift of time.
My purpose shines.
5:27 AM 3/13/2008
Good morning. Well, today should be the day. If I am being honest, I have really been dreading today. For me, this week has been all about preparing for today. I have been focusing on making sure Sydney has taken advantage of every moment. What I have come to find is that the last few days have been entirely normal and average. In the afternoons, we have arrived home and headed outside into the backyard. There the little tree huggers head for their little home away from home high above the ground. There they played and delighted. Eventually they would make there way through all of their favorite spots - the fence, the tree, the play house, and the trampoline - all above ground. After we all have had enough fun we would scramble to get dinner finished which was always late due to the fact that we had forgotten about it in all the fun. At dinner their were giggles and laughter. Normalcy of course also required a few tears as tweedledom and tweedledee fought to avoid the vegetables on their plate. After cleanup we made our way upstairs for baths, jammies, and snuggles and we watched a movie - this weeks feature has been Mr. Magorium's Wonder Emporium.
I guess the real point that I am making is that we have spent our time doing what we would do on any average day. I find this incredible and it leaves a warm place in my heart. The fact is that we don't know what our future will hold. For this reason, we wanted to have our children experience some incredible times before we faced the unknown. The best thing we could think of, the thing that we thought we would all love the most, is what we already had. If you ask me, that is a pretty great life. If we could have anything in the world, we would have what we already have. That tells me that we have learned something very important from this journey. For that, I am thankful. Although the concerts, trips, and amusement parks are all very nice; I think we would all prefer to just spend an afternoon together out in the backyard. We are lucky.
For what the rest of today holds I am not so thankful. I don't want to sound all gloomy and doomy. Perhaps I am just trying to protect myself from being devastated but I think Lynley and I have both prepared ourselves as much as one can. I think this is one of the reasons that although we wanted to know the answers we have been content to wait as long as Sydney was healthy and not at risk. To this day, I still have not found or heard a differential diagnosis that has really made me feel much better. I think that has been the damper for me. I honestly don't know what to hope for. Sure I want it to be benign but I just don't know what it could be. Yes, this is the source of my dread. I am hopeful and I am praying. I just haven't found a tangible real answer to alleviate my worst fears. It is a powerless position and perhaps that is why I have focused on my family and our normalcy instead of would would ordinarily be an incapacitating fear.
In the end, this evening we should know something. Although there are no guarantees, the team in Houston certainly felt confidence that they would know something. Have all of our trials and tribulations been because of relapse? Have we been fighting off what we know is probably the inevitable with relapsed neuroblastoma or are we going to be able to celebrate the fact that it was probably never anything at all. Will this tell us anything about our past? Did she relapse in October of 2004? Will she be able to live her life or will she be faced with the same unknown future? Will she play outside or watch it from the window? Today is so full of unfair questions for Sydney. No one's life should come down to this. And yet, the next two years of hers certainly does. Is this the beginning of her life? Is this freedom? Or is it going to be placed on hold again indefinitely?
So much hangs on a single phone call this afternoon. How I would love to let us just play outside in the back yard worry free. I want to give her that again.
Purpose - Prayer - Hope.
Wednesday, March 12, 2008
5:11 AM 3/12/2008
Good morning! Well you certainly would not have been able to tell that Sydney had a biopsy on her right arm yesterday morning. Today she was up to all of her usual antics. There was nothing to slow her down. This week is Spring Break for the kiddos at Southwest Christian School. Mimi has come in to visit and to spend some time with Sydney during the week. This gives Lynley and I a bit of a chance to catch up on work. With all of the scans and procedures as of late both she and I have spent the majority of our time outside of the office. Neither of us really thought it would be appropriate to take an entire week off to watch Sydney - not that we would not want to. Regardless, Sydney spent a wonderful morning running errands and playing with Mimi and DeeDee and then spent much of the afternoon watching the construction workers over the fence. They are in the process of renovating the house next store (this is month 9) and watching them is one of the kiddo's favorite past times. I often found her scaling the fence and climbing trees. If her arm was bothering her, she certainly did not let it slow her down.
Thankfully this week is a tremendously busy week. Although I am constantly thinking about Sydney's biopsy results, the hectic schedule keeps me from being able to wallow in worry for too long. Today we will be having the first of two days of a photo shoot for the CNCF. I don't know that I have mentioned it before but the CNCF is working on a national neuroblastoma awareness and educational campaign. It will include video, audio and print elements and should run pretty much throughout the country. The theme of our campaign and our message is heavily dependent upon the imagery. The photography is a major element to our success in getting our point across. Geno Loro, a well known photographer, has agreed to help us out free of charge and he has donated two days to photograph families. We have about 10 families that have been touched by neuroblastoma and are willing to be part of our message. Over the next couple of days we will be photographing them all over the place. It will be good to keep my mind busy and it is quite obviously for a good cause.
As you can probably tell this is a very strange place for me. It is quite like walking in a fog. Outside of our trip to Houston and some scans this has been such a completely normal time for us. Sure we have been worried about what Sydney's future will hold but it has been so nice to just be a normal family. We have done all kinds of normal activities and have just tried to enjoy the norm. The fact is that we know that, come tomorrow ,the fog will lift. We will most likely be able to see what is on the other side. When we glance past the haze will we see horror? Will we be thrust back into the roller coaster world of cancer? Will it be neuroblastoma? Will it be something worse? Could our prayers be answered and could it be something benign? I am still looking for that nice sweet differential diagnosis that says it could be something sweet and innocent but I am yet to find it. The fact is, the haze is getting ready to lift and fear is rolling in its place. Tomorrow afternoon we should have an answer. Please don't let it be neuroblastoma.
Spare my purpose.
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