Thursday, February 28, 2008

5:58 AM 2/28/2008

Well, so far, no news was pretty good news. Dr. Eames called with the latest set of unofficial results yesterday afternoon. The marrows and aspirates both came negative from the lab at Cook's. Although it is not surprising, it sure is a huge weight off of our shoulders. Once again, we find ourselves in the position of rejoicing that, at least, her marrows aren't jam packed with disease. Of course, the other side of this is that if this is actually neuroblastoma in her body then this result makes it a bit tougher to qualify for study drugs. At this point, I just have to hope that if she truly did relapse that they discover just enough disease to qualify her for the drugs that she needs.

While this is great news it really is only the tip of the iceberg of what is coming. There are many people looking at these marrows and these are just the first of several reports. We are still waiting to hear back from the team at Sloan and Seeger's lab. Sloan will be performing their own morphology but I am hoping they will also be utilizing RT-PCR. Of course, I will probably never know about it, if they do. Regardless, the point is that we will be looking at these marrows from many different angles with many different technologies. We are also still waiting on many of the reports on the imaging studies for Sydney. I am hoping that I will get an indication of what might have been found (or not) today or tomorrow. In just over an hour I will be heading on my way to Los Angeles. The good news about this is that I will be traveling with Dr. David Podeszwa who has a team looking at the MRI and bone scans and tonight I will also run into Dr. Heidi Russell who has another team interpreting the scans. It would be a quick turn around on the results but, you never know, maybe they will know something.

The other good news to report is that the kiddos are all doing wonderfully. Sydney has been having a blast at school and outside of a trip to the nurse for some Tylenol the day before yesterday (she was having pain at the biopsy sites) and then again yesterday when she got a paper cut on the eye. I know. It sounds painful but she was back up and running around within 10 minutes. Snots 2 and 3 are doing well too. All in all we really can't complain. That does not mean that we aren't continuing to hope and pray; just that we are extremely thankful for the continued normalcy amidst all of the stress. I will be coming back on Saturday night and, hopefully, armed with a bunch of knowledge. I already have an inkling of what is coming with the NANT and I am excited about all of the strides that they are making. Last year we left them with many challenges and I am happy to say that I know they have made big strides. I would love to take credit for being the inspiration for their change but I can tell you first hand that they were well on their way to creating the changes I suggested long before I shouted them. It is all about timing. The good news is that it is here. I am excited to hear about what else is coming down the pipeline.

As always, it is my purpose.

Wednesday, February 27, 2008

4:55 AM 2/27/2008

No news is supposed to be good news. At least that is what Dr. Granger told me. I, on the other hand, think of no news as being just that - no news. It is neither good news or bad news. It is just plain terrifying. Regardless, today I think we will hear back on something. Dr. Eames knows that I am going out of town on Thursday for the NANT meeting so I am pretty sure that we will get a call at some point in the day. I would also assume that disease must not be flooding from her marrows. If that were the case, I am quite sure that we would be inpatient by now. Of course, this is all speculation. I truly understand doctors feeling the need to get all of the facts before the share the news but it just drives me nuts. I don't only care about the big picture. I also care about the little parts. The problem is that I am not getting any of the parts so my obsessive compulsive brain goes into overdrive. I begin to wonder what they don't understand and I begin to obsess on why they haven't called. What did they find? Why are the waiting to tell me? I know they have the answers. I need to know too. Okay, I am done.

Sometimes purpose is enough to make you go stir crazy.

Tuesday, February 26, 2008

5:31 AM 2/26/2008

Yesterday was a success on many different levels. First, Graham survived his fourth birthday. Somehow, the boy ended up with a green face. His favorite color is green so I guess the teacher threw caution to the wind and let him make his statement to the world. Somehow, when I picked my child up from school he was still grinning from ear to ear and looked like this!

Please also note his brand new Great Wolf Lodge t-shirt , his favorite lunch of all time (a bologna and American cheese lunchable), his superman napkin and, of course, that unforgettable smile. Graham is much like his father - obsessive/compulsive but amused by the simplest of things. Who could be prouder? Last night we all celebrated at home. Sydney and I went to McDonalds to pick up happy meals as requested, we ate dinner, opened presents, and snuggled to watched Evan Almighty. It could not have been better - simple pleasures my friends.

The second success was Sydney's quadrilateral bone marrow aspiration and bilateral biopsies. I am, of course, ecstatic that she made it through the procedure without incident. She came out with bandages all over her little body but was happy to see that each had been personalized with hearts and happy faces from Dr. Granger. It was a fairly long procedure taking almost twice as long as normal - go figure. Dr. Granger stepped out to talk to us for quite awhile. In fact, we were still talking when they called us back into recovery. We talked about a myriad of things neuroblastoma but, surprisingly, very little about Sydney. It was a great chat. It is such a relief to see the doctor come out of the OR to tell us that everything is okay that we are often giddy. It must be so strange from her perspective.

We were quickly ushered back into the recovery room. On the way in I received a call from David Podeszwa who has been helping me gain an understanding of Sydney's arm from the perspective of an orthopedic surgeon. I wasn't on the phone with him for 2 minutes when Dr. Eames came fluttering in. Okay I say fluttering which is probably a bad description. When Dr. Eames comes in the door it is as if she should have background music (as in, The Right Stuff). Everything goes in slow motion. She has purpose when she walks. I always know answers are coming. I ended my call with David.

As always, Dr. Eames was warm and kind. We started with chit chat but quickly moved to the facts. Sydney was one of the cases in front of the tumor board on Friday(?) night. The tumor board was made up of all of our favorite names. It includes a group of people that have followed and cared for Sydney since her diagnosis - her surgeon, all of the oncologists, her radiologist, and a myriad of others. The meeting was to assess what to do with Sydney and where to go from here. It is no doubt that Sydney's case is unique. Her history is like no one else. The current theory, based on all of the evidence, is that it probably is disease. We are still waiting on a several tests and second opinions but the idea is that this is disease that has probably been there forever. The belief is that it was probably managed very well with all of the immunotherapy that she has had over the years. Looking at the structure of the radius they believe that Sydney's body has been doing an admiral job trying to wall off the disease and that this is, perhaps, a very old lesion. In this context this is good news. Given the fact that this is probably disease, her body is doing a fairly good job of containing it. This could even point to a very chronic and slow growing derivative of her disease. This is far better than the alternative which is fast growing and aggressive disease. In the end, this understanding of her disease gives us permission to move forward pending the second opinions of her scans. I am also pleased to say that they have agreed with my theory on what and how to treat Sydney (further proof that I am not entirely nuts) and secured a spot for her in the trial that I was hoping for should we move forward. This is good. Trust me. If it is disease, at least all of the correct pieces are falling into place. Don't ever forget how much worse it could be. So far, we are very lucky.

Bottom-line, we still don't know for sure what this is. Yes, it still reeks of relapse but it is no guarantee. All of a sudden as we begin to get our reviews of the scans back a few other differential diagnoses are starting to raise their heads. I have heard rumor of other tumors both benign and malignant to explain these findings. A biopsy of the arm is still not out of the realm of possibility. It will be an interesting few days. We still must continue to hope and pray that the marrows come back clean from all of these different labs and for clarity for all of those reviewing her scans. For better or worse, she will have one of the most viewed arms in the history of man. She is literally being looked at from coast to coast. This is obviously a trying time but I am so comforted by all of those that are working so hard on behalf of my daughter. I know I have no guarantees but to know that we are making decisions on the best information available from experts across the country surely takes a large weight off of my shoulders.

She is not just my purpose.

Monday, February 25, 2008

5:18 AM 2/25/2008

Amidst all of this turmoil we still managed to have a pretty exceptional weekend. It all culminated last night at Graham's 4 year birthday party at Pump it Up, the inflatable wonderland. For those of you that have never heard of it, Pump it Up is a large indoor facility jam packed with blow up bouncy houses, slides, and obstacle courses. The kids spend a few hours completely wearing themselves out jumping and running until their hearts are content. It is the perfect marriage between fun and completely wearing your kiddos out. Sydney, Graham, and Ainsley all pushed the limits on what could be achieved, each earning new personal bests in mayhem. It was both fun and tiring to watch. I am completely amazed at their tremendous energy - all of them.

Today will mark kind of an unusual day. First, today is Graham's real 4th birthday. We will have to ensure that we find ample time and opportunity to make this day as perfect as we possibly can for him. Lynley and I will be escorting Sydney to the hospital for her little surgical procedure. She is scheduled to be under the knife (or corkscrew) at approximately 10:30 AM. Graham will be having a lunch party with cupcakes a little later in the morning. This will require some clever timing. Thankfully DeeDee has agreed to go to Graham's school to help them celebrate his birthday. If this is anything like the last procedure, I can only guess that this will take a while. We are hoping that she will be awake in recovery by about noon. The good news is that this should give her ample time to recover before the kiddos get home from school.

Tonight Graham has asked that his birthday be at the luxurious McDonalds. He has made this choice not because he likes the food but, rather, because there are toys in the kid's meals. He would have preferred Chick-Fill-A but, in his words, they just have books as prizes. So, the Dungan clan, dressed in our Sunday best will be heading to McDonalds for our gourmet dinner. What a wonderful time. Of course, it really is about what Graham wants isn't it. I just hope they don't run out of boy toys before we get there.

So, there you have it, not a particularly normal day. However, it should have all of the necessary elements - drama, comedy, and realism - all wrapped into one. Today, my hopes and prayers are two fold. First, for Graham, I hope he has the absolute best birthday ever and that we are able to focus on him during this trying time. Second, for Sydney, I pray that she has a safe bone marrow aspirate and biopsy, that she recovers well, and that none of the labs find any cancer cells in her marrow.

It will be a full day of purpose on many, many different levels.

Friday, February 22, 2008

5:07 AM 2/22/2008

Good morning. Well, I am ecstatic to say that Sydney's CT scan came back clear. This is a pretty good indication that we don't have any soft tissue tumors floating around her body. The CT showed a little thickening in her sinus cavity but this is consistent with just about every CT scan we have ever had. Sydney continues to be full of snot. Go figure! I could have told you that on many different levels. This is not particularly problematic unless we restart active therapy or have a port placed. Assuming that is that case, we would probably have her ENT do a roto rooter job on her sinuses. This would hopefully reduce her risk of sinus infections, ear infections, and the evil fever. You may remember her days with a port. They were filled with many hospitalizations for fevers. These were usually related to existing ear or sinus infections but the team was never willing to let us risk not hospitalizing her. The risk of a line infection was too great and things could go south very quickly. As we prepare to move forward we would want Sydney to be able to stay out of the hospital as much as possible. So, if we go in that direction, we will try to coordinate our line placement with our ENT to reduce Sydney's anesthesia exposure - no reason to anesthetize her twice if we don't have to. So, anyway, the clear CT is tremendous news. It indicates that if this is indeed disease then it is a very small disease load.

On Monday morning we have scheduled Sydney to have another set of marrow aspirates and biopsies. I think I mentioned this before but we will be sampling 4 sites, 2 in front and 2 in back. The reason we are doing this is because we want to increase our chances of finding disease. We want to give the experts every opportunity to find something wrong. Of course, we still hope that they will not find anything. If they find anything then this, of course, means a pretty definitive relapse. If they don't or if the results are murky then I think we will need another long sit down. Furthermore, we have now shipped her MRI results to 3 other experts around the country to see if others feel that this is as cancer-ish as Dr. Gillespie does. It will be based on all of these results in the week(s) to come that will hopefully help us to come to some clearer conclusions.

Now, let's assume the marrows come back negative from everywhere. That is a best case scenario. Can we believe it? Yes, I think we will have a high lever of confidence that the report from Genzyme is a false positive. This would be great news. However, in and of itself, it would not explain the radius. If anything it would make it murkier. In this case our future would depend on the readings of the MRI. Unless someone can come up with a pretty convincing differential diagnosis (something other than neuroblastoma) then I think we have to push forward. I know that Dr. Eames would probably still be hesitant but, what does she know? She only wears that white coat, went to school for all of those years, and spent the last 20 or so dedicating her life to pediatric cancer. I, on the other hand, am a paranoid schizophrenic dad with almost five years experience of being completely nuts. I think I know what I am doing here. Clearly, I have advantage.

Okay, all joking aside. It would be an interesting conversation. These findings would dictate caution but until someone can give me a good argument of what this can be - other than neuroblastoma - I am going to focus on killing the stuff as fast as I possibly can. I am sorry. The argument that we don't know what it could be because normal kids don't get MRIs has run its gauntlet with me. I need to hear and understand a rational explanation of what this could be (other than neuroblastoma) to slow me down. The supposed disease has not yet gained an upper hand and I do not want to wait to give it the opportunity. I truly believe we can beat it now if we can get on top of it before it spreads. The problem is that I don't know at what point in time the disease will cross that line - a day, a week, a month, a year. Don't know! I do want to get to it first though.

As you can tell, I am in moving forward mode. I have to accept that this is neuroblastoma so that I can get everything into place as quickly as possible. It is nice to be cautious and concerned but when we are ready to pull the trigger, I want the scans in place, the doctors in place, the travel in place, and the drugs in place. I want to be ready to go fast and hard. I don't want to have to wait for days and weeks for committees to debate or for protocols exceptions to be agreed upon. I want to go while we still have the upper hand. It is for these reasons that I have to move forward now. Fine, we can sit and debate degrees of grey in this diagnosis but don't think for one minute that I am not organizing in the background. I am hitting the ground now.

So what happens if we get a good differential diagnosis? What happens if we discover this is something else? Well, I get to call a bunch of people and say "Um, ah well, I am so sorry but it does not look like my daughter has the ol' cancer after all. So sorry for the inconvenience." Something I would gladly do in a heartbeat. Trust me, I am hoping and praying. I just don't know how realistic that level of clarity is.

Hoping and praying for the best but preparing for the worst.

It is my purpose we are talking about!

Thursday, February 21, 2008

12:35 PM 2/21/2008

Okay, brief update here. Dr. Eames is apparently a much harder sell than Lynley or I. She is not ready to call this a relapse. Stubborn oncologist, but you have to love her. She certainly has Sydney's best interest at heart. She clearly does not believe in the definitiveness of Dr. Gillespie's call on the MRI. She is in search of more truth. In the meantime everything is moving along at a rapid clip. We are at the hospital now drinking contrast waiting for our turn at a full body CT scan. I am guessing that it will be nearly 4:00 PM before we are out of here and Sydney has a birthday party almost immediately after that. For this scan we are praying that they find no further lesions or soft tissue anomalies. This is a biggy. I would ask that this scan would provide more clarity regarding the radius but I know that is probably not a possibility. We are just ensuring that there is no soft tissue disease. If you have a chance, prayers are still welcome.

I will write as I get a chance.

Right now , I am back to my purpose.

With hope,

5:54 AM 2/21/2008

So sorry for the late start. As it stands, I was up late last night and as you might expect my mind was still reeling from yesterday's talks. First, you should know that everyone is okay and I am strangely at peace. This will shock you when I share the information that follows. Yesterday was supposed to be about going over the final details of Sydney's biopsy of her arm. We had been led to believe that everybody was okay with the idea and it was a go. However, after discussing the risks of the biopsy and the likelihood of them actually getting viable cells we decided to forgo the procedure. Furthermore, at this point we have decided to go ahead and call her officially relapsed. I know those words will come as a shock to many but I think it is something that we have prepared for mentally.

Here is how we got there. The spot on the MRI is teeny tiny, 3 mm to be exact. The lesion seems to be right at the junction of the inter osseous membrane. That in itself is not a major hurdle but it is also behind a nerve and several vessels. Although not likely, this could leave her arm with some paralysis. Being her predominant side, and her writing arm we really did not like the idea. If that was not enough, this was an incredibly small spot to find. Dr. Gillespie gave us the impression that it would be difficult to find and that hitting the exact spot would be difficult. Finally, if she navigated past all of the nerves and vessels and hit the correct spot she did not seem to have very high confidence that she would be able to obtain viable cells that were not crushed or otherwise damaged.

The other thing that she brought to our attention is what this wasn't. It is not trauma and she felt it was highly unlikely to be any type of infection. Given where it is and how it is acting she found it very unlikely to be infection because she felt that we would be seeing other symptoms as well. She felt that if this were infection this would not be the primary location and we would probably know that it would be going on somewhere else. Finally, there were a lot of things that made this seem cancerous to her. For example, the boney protrusion is consistent with cancer believe it or not. She finally explained that to me in a way that I could understand. Essentially there is a reaction when the bone is being eaten away on the inside that it begins to repair itself on the outside. This is what she believes was happening. All of this left her with what will go down in history as the quacking duck diagnosis. If it walks like a duck and quacks like a duck then it is neuroblastoma.

In the end, she was positive about her conclusion. There is no doubt in Dr. Gillespie's mind that this is cancer. However, I think that is supported by the fact that she thinks her argument is bolstered by the positive marrows from Genzyme. I am curious as to if we threw the marrow findings out if she would be nearly as sure. Regardless, she was convincing enough that we decided not to do the biopsy in favor of calling it an official duck.

The only reason we need a live neuroblastoma cell is for Sydney's eligibility to get into trials. However, she has such a minimal amount of disease it is unlikely that she would have it for long. The fact of the matter is that we would probably treat her the same way regardless of the finding. Look at it this way. If the biopsy of her arm comes back negative there is such a high risk of false negative that we would still have to assume that it is disease. We would. We have to. If it came back positive it would not change how I treated her at all. We would use the exact same plan. In this sense, I just have to ensure that we can get the treatment agents that we want to use on her to treat the disease. The only benefit the arm biopsy buys Sydney is if it is the difference in her qualifying for a trial or not. In short, I would spend the rest of the night talking to doctors all over the country ensuring that I could get the drugs that Sydney needed.
Wow, I could go on for hours. I think a little bit later in the morning I will put a video online to explain much of this. This was not even the tip of the ice berg and I have already written well over a page.

So, anyway, after we met with Dr. Gillespie Dr. Granger came in for a bit to chat. Lynley and I had already begun making plans. Lynley and I are wide open to ideas from our team but I must tell you that we already had a definitive plan in place. We discussed a few options but, at this point, I think we were all in agreement. Dr. Eames had to leave earlier in the afternoon so I have not had the opportunity to go over it in detail with her and I am anxious to do that. I want to hear her opinion and thoughts. She is about the only one that could talk us out of the direction that we are planning to go. I will be chatting with her at some point today. I am sure it will go down in history as another long chat with the Dungan's. Today will be all about scheduling for Sydney. Sadly a port will have to be placed but, in a way, I am glad. She is so hard to hit and I think this will bring her some comfort and it will definitely reduce her anxiety. Other than that we will be ordering a full body CT and coordinating 4 different labs to receive her marrows. We will also be repeating the bone marrow aspiration and biopsy. This time, however, we will be doing them bilaterally, posterior and anterior to increase our sampling. Our goal with this new marrow is to do our best to find disease and we will be sending them to the best labs in the world for finding disease. After doing more research yesterday about Genzyme's technique in neuroblastoma I have even less confidence in their results. They are using an older methodology that is known to be plagued by false positives. I have no intention of sending her marrows back there.

I guess from all of this you can tell which Mark is in charge. I know I will have bad days but right now I have all of the confidence in the world. I feel power. I know exactly what to do and how to do it. I can't guarantee any results but I do have confidence that I am doing the absolute best for Sydney. Given everything that is available there is no doubt in my mind that we are doing the exact right thing for her and her disease. There will be tradeoffs. There are risks but I am comfortable with the plan. Sydney would be too.

You also may note that I got out of this without doing the exact thing that I said I would not do. Here we have Sydney in another relapse situation without definitive proof. I am hoping the new marrows do not clarify the situation. I hope they fail to find real disease wherever they look. But, regardless of whether they do or not, I have the utmost confidence that we are doing exactly what is right for Sydney.

The tough part will be telling Sydney. She will definitely be a part of the decision making process. In fact, you can say the decisions that we have made and the treatment plan that we have crafted are based on her needs.

Wow, there is so much to say and not nearly enough time. I will try and add a video later but I have to run.

I have more purpose today than you can imagine.

Wednesday, February 20, 2008

5:16 AM 2/20/2008

Sydney had a great day yesterday. As usual she was difficult to pull out of bed in the morning but she had the first full and complete day that she has had in a while. The fever was gone. She was also extremely excited to be back at school with her friends again. I personally did not want her to go to school. I wanted to hold her, spend time with her, and never let her go. It is such a selfish feeling. I know that. In the end, I simply put a smile on my face and ushered her out the door. I then spent the next 7 hours wishing that I was with her. I often contemplated going to pick her up early from her 45 minute stint in aftercare but I also knew she liked that time as well. In the end, I would just focus my head back into work to keep myself from going nuts. At this point I am focusing on tasks that keep my mind running so I don't have time to sit and wish and pine away. The trick for Sydney is to keep things as normal as possible. Currently, she seems happy and I don't want her to feel the way that I do.

Today we will be picking her up from school and taking her to the clinic. At 2:00 PM there will be a meeting with Dr. Gillespie and Dr. Eames to discuss the biopsy of Sydney's arm. As I had mentioned earlier, I think all of our minds have been made up. None the less, this will be a good opportunity to discuss the risks of the procedure and to hopefully get a better handle on what may or may not be ahead. It is a very, very scary time.

I am still just reeling from all of these tests and scans. I can so easily see that this could be cancer. Yet, on the other hand, I can also see logical ways to hold out hope that this is not my worst nightmare. I guess the difficulty is that we now have mounting evidence before us. The bone scan in and of itself is not that bad. As I said on day one, it is a nonspecific test. It could be anything. Yes, it could be cancer, but it could also be infection, trauma or fluke. When the MRI came along it did not surprise me that there was something in the same place. Although it ruled out some kind of technical malfunction I really did expect it to confirm the result somehow. Of course, I was hoping it would confirm it with more clarity and point to infection or trauma. Not so much. Instead, it confirmed the spot, but made the diagnosis even greyer. There are things about this spot that are cancer like and there are things that are not. Again, in and of itself and in combination with the bone scan, there is nothing screaming neuroblastoma. With these findings I would have been worried but I also would have felt somewhat confident that it could be something else. The clean marrows by morphology gave me even more ammunition. Either this was a very local relapse or nothing at all. When the immunocytochemistry on the marrows came back positive this further constricted the noose around our necks. This was further evidence, unrelated to the spot on the arm that this very well could be disease. It is heartbreaking really. This was the tough stumbling block for me. The harder part about it is that this result has been called into question so many times. The fact is that we know mistakes are possible and this test and lab has a history of them. In this case we are hoping that the test is simply wrong. We are hoping that the antibodies used to identify neuroblastoma cells are actually picking up something else. While it sounds wild it actually has happened many times before. With all of the things that we have done to Sydney's marrow this is certainly a possibility. Furthermore, we have not had any tests like this since we gave her the vaccine. It is possible - not likely - but possible.

It is all of these inconsistencies that dictates that we must go in. There is a lot of mounting evidence that this could be neuroblastoma. Unfortunately there is nothing definite. It is as Dr. Eames said, we need to prove it, one way or another. In the end, these are the reasons, that we will likely be opening up her arm and surgically removing a small wedge of her bone at the point of the protrusion. We will also be going for another round of marrows on her hips. We will be hitting 4 spots with the hope of increasing the sample size and our chances of finding a single cell, a single neuroblastoma cell. It is all so surreal.

Although I have had a purpose everyday, I had forgotten what it truly feels like.

Tuesday, February 19, 2008

4:26 AM 2/19/2008

Well, this morning isn't a particularly good one. Late yesterday afternoon Dr. Eames called with the further testing on the marrows from Genzyme and, sure enough, they were positive. While Dr. Granger had told us that everyone was positive I still did not want to hear the news. I quizzed Dr. Eames about this whole "everyone is positive" thing. I found out a little more. This company has had issues in the past. 18 months ago everyone was positive. They had some issue with staining and have acknowledged it. Essentially their were problems with both the antibodies and the staining procedure which illuminated cells which were not actually neuroblastoma cells. This test is an antibody/staining procedure so they do not actually see neuroblastoma cells. What they see is staining. The more staining - the more neuroblastoma, theoretically. They have had sporadic issues since. The company, of course, believes that they have improved their process and feel confident in their product. They stand behind their result. I would expect that. Unfortunately, they feel that Sydney is positive for neuroblastoma.

Another finding that was bothersome to me was the fact that she was significantly more positive on one side of her hip than on the other. While I could probably dig very deep to come up with a rationale of why this could be the case, it certainly isn't comforting. This is clearly not what we were looking for. It is bad enough that we feel that we need to get more aggressive with identifying what is going on. It looks like we will be meeting with an orthopedic surgeon on Wednesday who we already know is going to want to biopsy the spot. We will know more later but it looks as if the procedure will happen next Tuesday.

This is so reminiscent of 3 years ago. Although we have migrated to another bone and we are talking about an arm instead of a leg it is eerily similar. Talk about putting our money where are mouth is. Do you want to know if we relapsed three years ago? We are about to find out.
This is becoming more difficult by the minute. It is one thing to exist in the world where you know your child may have relapsed and have the hope that she really did not. It is quite another to be faced with the reality. I know we have to know the answer. I just don't know if I can handle the truth.

Yesterday we also took the girls to see Dr. Debbie. Ainsley has a confirmed ear infection and has been placed back on antibiotics. Surprisingly, Sydney was not. Seemingly, however, she seems to be having some pain related to her Eustachian tubes. When Dr. Debbie applied pressure she squirmed a bit. We have put her on Rescon G/G and are hoping that we can get it cleared up relatively quickly. Last night, however, she produced a fever of 100.7. I don't think I need to tell anyone how nervous that makes me. Regardless, I can feign blaming it on a sinus infection and that still gives me a bit of hope that this is unrelated to neuroblastoma.

Other than this Sydney is in excellent condition. She has had a blast running and playing and could not be happier. She is having fun with her brother and sister and even took out time to play a couple games of cards with me. By the way, I am not one of those nice Dad's that let their kids win. They have to earn it. Sydney is slowly learning to beat me. She is getting better and better everyday. That is progress.

That is purpose.

Monday, February 18, 2008

5:31 AM 2/18/2008

I probably should have written a bit before today. Quite frankly, I just did not know what to say. In the meantime we have completed Sydney's MIBG, taken a mini-vacation to Great Wolf Lodge, and received most of our results. It has been a roller coaster of emotions.

I guess we should start back on Friday afternoon. I should tell you that as a result of last week's ridiculous scheduling of Sydney's scans which subjected her to multiple pokes unnecessarily, I have lost all modesty when it comes to advocating for Sydney. I have always been the polite one and even when I know things are not going correctly (as long as it does not hurt Sydney) I am always willing to follow directions and be relatively accepting of the bureaucracy. I would go along with things even when I knew them to be completely wrong. I always thought that the process was the way it was for a reason or because things had to be done a certain way. After watching this go on for almost 5 years both with by child and others the switch finally flipped. I am still polite by I am firm and resolute. I will no longer just follow. I have found that it does no one any good. Sometime when I have more time I will tell you some stories.

The new me came out of the box on Friday while we were waiting for Sydney's MRI. As I was checking her in they said "anesthesia" as though she was scheduled to get some. I said 'no.' She looked at me quizzically and then closed the window and talked to someone back in the room. You see, the funny thing is that they had called two days prior to talk to us about anesthesia. At this time I told them Sydney did not need it. After a thorough discussion I reluctantly agreed to NPO her (just in case), however, we were fundamentally in agreement that she would not need anesthesia but that we would prepare her just in case. We had devised a plan.

A few minutes later, a nurse came out to meet with us in the waiting room. She asked me if Sydney would be needing anesthesia. I said, "No." She then proceeded to tell me that unless Sydney had anesthesia that we would need to reschedule. Knowing how difficult it was to get a slot at the MRI and knowing that it could be weeks, I said, "No." The issue was that the radiologist was not there and without him there was no one to oversee the contrast that she would receive. Had the anesthesiologist been caring for Sydney he would have done the job. I said that is fine. Have the anesthesiologist do it. He was still there. He was planning on anesthetizing Sydney anyway. She became difficult. I did not. She tried to explain the process again. I explained that I had NPOed my daughter all day. I followed every direction and we weren't going to reschedule due to the back office miscommunication. The next thing I knew she was being called over to the window. They mumbled for a bit. She walked over and apologized and explained that they had not received the information. Sydney would be scanned as planned - without anesthesia.

The point here is that if I did not stand up and say something Sydney would still not be scanned today. We would have left and she would have been the one that lost - all because of some back office miscommunication that had nothing to do with her. I have put my foot down, politely, but firmly.

Okay, so we proceeded with the scan. Amazingly Sydney stayed still through the entire MRI with her arm straight over her head. I could not have done it, but she sure did. We were enormously proud and a little gratified after all of the discussion about anesthesia. To be honest, there was little doubt in my mind that she would do it perfectly but, after watching all of the radiology personnel giving us that look that said there was no way she could do it, I was just that much more proud.

Ordinarily, I would go onto tell you about our incredible time at Great Wolf Lodge but I can see that there is still too much to cover so that will have to wait for another day. I have to get to the results. Up front, I will tell you that they are mixed and we, once again, find ourselves in a very strange place. It turns out that Sydney's bone marrow aspirates and biopsies were absolutely clean. There was no evidence of disease. This is great news. Today we should be receiving the results on some more sensitive tests of her marrows which everybody is preparing us to be positive for neuroblastoma. I have not done the research on the lab that they are getting these results from but, from what we understand, nearly everybody receives a positive result from whether they have neuroblastoma or not. So, yep, we have that to look forward to. But still, we have the existing report to be happy about.

The MRI was a different story and although it did not come out and scream neuroblastoma it did not do the opposite either. It is a mixed result and although there is clear evidence of abnormality its meaning is questionable. You see, part of the report is very "cancer-like" and part of the report is not. Here, I will show you the report so we can discuss it. Enjoy.

CLINICAL HISTORY: NEUROBLASTOMA, QUESTION OF ABNORMAL BONE SCAN INVOLVING THE MID RADIUS TECHNIQUE: Extended MRI of the right forearm was performed in the coronal, sagittal, and axial planes using spin echo technique. Sequences included TI weighted STIR, T2 weighted, T I weighted fat sat with 3 ml of IV Magnevist. A total of 223 images were obtained in the evaluation.FINDINGS: The area in question demonstrates abnormal increased marrow signal on the STIR sequences involving the entire proximal third of the radius. Furthermore, there is a small focal area off the medial aspect of the cortex at the junction of the middle and proximal third of the radius that demonstrates a small area of protrusion, with central high signal and seems to be related with the inner osseous membrane. No edema is noted in the adjacent soft tissues and no abnormal enhancement with contrast administration is identified. The overall appearance is not normal but is not particularly good for involvement with metastatic neuroblastoma in that the cortex in general of the proximal third of the radius is intact. Furthermore, no adjacent edema is noted. This latter finding would also go against trauma and infection. The significance of the findings are uncertain, but does not appear to be aggressive. A follow-up exam in 6-8 weeks to determine if there has been a progression would be worthwhile.OPINION: ABNORMAL AREA INVOLVING THE MEDIAL ASPECT OF THE JUNCTION OF THE MIDDLE AND PROXIMAL THIRD OF THE RADIUS WlTH ABNORMAL MARROW SIGNAL BUT WlTH NO ADJACENT SOFT TISSUE EDEMA AND NO DESTRUCTION. THE FINDINGS ARE OF QUESTIONABLE SIGNIFICANCE BUT A FOLLOW-UP STUDY WOULD BE WORTHWHILE.

As you might expect, I have spent most of the weekend studying this report and doing research. The crux of the report comes to some contradictory findings. First, the abnormal marrow signal is cancer-ish. However, it is also infection-ish and trauma-ish. There are all kinds of studies on this but the fact that it is a large area of abnormal signal actually points to a higher probability that it is injury or infection related. However, you will also note that there is no indication of injury. The really confusing part of all of this is the boney protrusion. This is strange in that cortex is intact. Furthermore it is a protrusion and neuroblastoma is a predominantly osteolytic (bone destructing) process and I am confused by that as well. Finally, there is no edema in the soft tissues next to this protrusion which is normally seen with cancer, infection, or trauma. It is a very strange result and not one that I am particularly comfortable with.

I happen to know a little bit about how cancer (neuroblastoma in particular) metastasizes to bones. In fact, I would even go as far as to say that I know about all that has been printed. I know exactly what is known about how neuroblastoma seeks out bones and how it infiltrates them. What I know less about is how neuroblastoma leaves the bones. For me this is the big unknown. Without this picture clear in my head it is hard to truly make an informed decision. I need to figure out what is going on in that bone. Regardless, we are in a holding pattern until we find out more. I have emails out to just about everyone I can think of to come up with a plan. Unfortunately, I just don't know that they will have an answer either. We are all in a quandary.

Today, I am confused by my purpose.

Friday, February 15, 2008

4:56 AM 2/15/2008

As you could tell from my last entry, yesterday went pretty well. The rest of our day pretty much rode on the euphoria of our earlier discovery of nothingness. Her bone marrow aspiration went well and was relatively uneventful. For some reason, outpatient surgery was packed. In fact, Sydney would wake up from anesthesia a full hour before they would have a bed available for her in step down. In fact, it would be another 30 minutes after that until we saw her. That of course did not make Lynley or I particularly happy. We had visions of Sydney calling for her Mommy and Daddy. It was bad enough for her but I can only imagine much worse for the younger children that were being held up or for the families that had not been through this 24 some odd times before. Regardless, we would eventually get to see her smiling face.

It was actually quite funny. She is following in her father's footsteps of being relatively obnoxious (in a cute way) after anesthesia. As we were waiting to be officially discharged, the little bugger kept trying to make an escape. Her mother and I were standing at both ends of the gurney and she would try to sneak around us to get down and make a beeline for the door. She was obviously having a blast. This round of anesthesia was pretty clearly a great trip. Eventually they would wheel her down to radiology where she would finally get an x-ray of the correct arm. We still don't know the results. So, I am assuming it was not life altering and a stress fracture was not clearly evident.

The other piece of good news that would come from the day is that they would leave Sydney's IV in her arm. Potentially, if it survives the night and day, it will save her a fourth poke this week which we are all in favor of. The less exciting news of the day is that the want us to beep her NPO (no food or drink) all day today just in case they have to sedate her. I have tried to explain to them that I had a high level of confidence that she could make it through the entire scan without anesthesia based on her past performance but they would have nothing to do with it. What do I know? They want her to be ready for anesthesia. This has Lynley in a bit of a funk and she is feeling pretty defiant. It would not doubt me that she feeds Sydney a five course meal this morning.

So, what does all of this mean? Why a spot on the bone scan and not on the MIBG. Well, the big question of the day has to be, is Sydney still MIBG avid. This debate has gone on for well over 3 years. The fact is that we don't know. If you believe that she relapsed in the tibia 3 and a half years ago you would have to assume that she is no longer MIBG avid because the spot never showed up on the scan. However, if you are inclined to believe that she never relapsed in the first place then you have to assume that she is probably still MIBG avid. If that is the case, then this finding on MIBG (or lack there of) would be a pretty good indication that this is not neuroblastoma. It is still a 50/50 deal and an unknown but, oh so much better than a confirmation of our worst fears. In fact it is possible that we might get through all of this scanning with no clear answer. I am hopeful that the MRI will show a stress fracture or something clearly not neuroblastoma but that is a pretty long shot. Hopefully this morning we will get a report on the marrows. I imagine it will be next week before we here back on the bone biopsy.

Regardless, I want to thank everyone for their thoughts and prayers. It has been a huge lift throughout this week. Sydney seems to be handling this all very well - probably better than the rest of us. She has tolerated the hectic schedule well and even commented on yesterday as being a fantastic day. You know, she is right. Perspective is everything.

So are my purpii.

Thursday, February 14, 2008

10:54 AM 2/14/2008

We met with the radiologist this morning after the MIBG scan. The report is not yet official but I can tell you with a pretty high level of confidence that the MIBG scan was negative. They did not see a spot on her right arm. As I mentioned before, this is incredible news. This is no guarantee that she has not relapsed. For many reasons that I do not have time to go into right now, it could still very well be neuroblastoma. Bottom-line we no longer know how MIBG avid she is. Regardless, this is still wonderful news and a step in the right direction. Currently, we are in the preoperative waiting room and Sydney is watching TV. She is scheduled to go under anesthesia for her bone marrow aspiration and biopsy at 12:00 PM. We are continuing to hope and pray for the best. Hopefully, these bone marrows will continue to show no evidence of disease and keep us moving in the right direction.

Still with hope, purpose and perspective,

4:19 AM 2/14/2008

Valentines Day. Hmmm, I noticed. Interesting.

Well, here we are. This is it, the early morning hours before the rest of our lives. This is the day. It is truly an odd feeling to sit here in front of my computer this morning. I can't really explain the sensation. First off, I am calm and strangely some how at peace. In one sense, prayers have been answered. I have strength. Yesterday was an incredibly beautiful day with my children. Oddly, it was really no different than any other. Now, I did pick up Sydney from school at noon to take her down to the hospital for her MIBG injection and her second of four IVs this week. That went particularly well and I can tell you that we have nurses Linda and Carla to thank for that. Regardless, it was very routine stuff. We read books. We sat in the waiting room. Lynley talked to Sydney while I shortened her jump rope. There was nothing else. Just us.

Later that afternoon Sydney and I would pick up the others from school. We would giggle and chat on the way home in the car. Once at the house Graham and Sydney made a beeline to climb the fence and disappear into the back yard. Ainsley and I would go in the traditional way (through the door) and make everyone juice and snacks. After that there would be cleaning the leaves out of the pool, climbing trees, jumping on the trampoline, pretend play in the playhouse, chasing the dogs, and various other normal activities. Later on there would be such routine tasks as making dinner and eating. The day would be capped off with stuffing the kiddos in their jammies, a little tickling, and some kisses goodnight.

See, I told you - routine. It was really no different than any other day. So what made this day so incredibly beautiful and special? Why would I rank this up there as one of the best days of my life? The one great thing that neuroblastoma brings into your life is perspective. I liken it to one of those machines that optometrists use to get the proper prescription. You know the one. The machine that you look through. There are lots of lenses and clicking. You look through the lens, they change the lens and then ask you which is better. Many of them are blurry but eventually, when you finally get the right lens, everything becomes crystal clear. It is the same eye chart that you were looking at before but all of a sudden you can see it with such clarity. You can see every detail of the letters and even the words "Made in the USA" can be made out along the bottom of the page. It is revolutionary. It is clarity. It is a miracle. You can see!
Neuroblastoma has the same effect. Although it will not improve your eyesight, it will certainly give you the focus to see what is important. It is clarity in life. The immediate sense of what is important. It is appreciation. It is an entirely new perspective. It so clearly defines purpose that there is no doubt.

I am a typical parent. I am no more or less special than any other. Just like others, I get caught up in life. I am lucky. I have a neat job. I get to fight for kids like Sydney everyday. I get to "do" something about it every day. However, just like any other person, I also have the habit of getting too wrapped up in my work. I come home worried about another child, concerned about whether a drug is going to be released so that we can open another trial, or thinking of another family who needs some help in making a tough decision. The list goes on. I get so consumed with my work that I sometimes forget to sit back and appreciate the wonderful family I have. I let stress, work, and everything else get in the way. This is not to say that I am a bad dad. I pay attention to them. I play with them everyday. I am physically there - just not mentally.

That was what yesterday was for me. It was my time to get in touch with my family - to prioritize them, not only in body but in my mind. I had the opportunity to once again see life through my own children's eyes. I had forgotten what a beautiful world it could be. I am such a lucky, lucky man. I have the greatest family in the world and I know that - again.

So, here I sit. In a little over 4 hours from now I will have a very good idea of whether this will be the best day of my life or the worst. It is just so odd to be sitting here and know that the answers sit so closely on the horizon. I am still strangely calm. I am confident in knowing that no matter what happens that we will get through it. I never want to forget this feeling. I never want to forget what I have again. Today we will get either great or horrible news but the one thing I promise is that I will never forget what yesterday gave me. You may find us shouting with joy or huddled in tears but you will find us together - completely.

At about 8:30 this morning Sydney will begin her MIBG scan. There is no doubt in my mind that by 9:00 AM I will have a clear picture of Sydney's arm on the screen. I will know if that spot lights up or not and whether our worst terror has been realized. The spot will either be there or it won't. If it is there then we will know for sure it is a relapse. If not, we will have hope that it could still be something else. God, please don't let it be there. Don't let this be a relapse.
This scan will be followed by a trip across the street to the clinic where Sydney will have a quick check up before her bone marrow aspiration at noon. Amongst all of this, at some point, it is likely that we will have an x-ray of her right arm. Boy do I hope it is necessary.

Although the thoughts have been through my head a thousand times it is to early to speculate what all of this will mean. There are so many possibilities that could come from today. There is still a long process ahead to truly figure out what is going on. We need success with each and every test.

So, here we go.

I will do my best to update as I can throughout the day. Obviously there will be issues with internet access and time to sit and write but, I will do my best to let you know where we stand. Your prayers are being felt.

With hope, purpose and perspective,

Wednesday, February 13, 2008

4:41 AM 2/13/2008

Yesterday, on the way back from Dallas, Dr. Eames called. She spent a little over 20 minutes on the phone with me. You know, after being away from her direct care for so many years, I had forgotten how comforting she was. I knew there was a pretty good reason that we had named Ainsley after her its true impact had just temporarily left my mind. It is difficult to describe. Even with all that is up in the air, she seems so incredibly in charge. She is so reassuring. I would follow her anywhere and do what ever she asked. She was very clear in our conversation. She left no doubts. I did not know where this journey would take us but I was reassured that she had a plan and that she knew exactly what to do. Somehow I had clarity without a single clear answer.

In actuality this is all very simple. We have a spot on a bone scan. For those other parents that have some experience in looking at these the spot appears to be about a centimeter (in life size) and has about 1/3 the intensity of a joint when compared on screen. The spot is not black. It is dark grey. The spot ccould be cancer, trauma, infection, or fluke. The other thing that we know definitively at this point is that it truly is on her right arm. This still hits me as strange but it is something I have come to terms with. We do not believe that this is one of the spots that lit up originally at diagnosis but we do not know that for sure.

Dr. Eames said it was worrisome but not to get myself into a tizzy. We still do not have enough information yet. This still can be nothing. Don't give up hope. We just need more information. On Thursday we had previously scheduled a MIBG scan and bone marrow aspiration and biopsy. We will continue on with those. She has added a x-ray of the right arm on Thursday and an MRI at Cooks' Northeast campus on Friday afternoon. We hope to hear something on the bone marrows and MIBG as early as Thursday evening or Friday morning. I honestly don't know when we will hear on the MRI. Based on all of this we should be able to form some type of opinion as to what is going on. We want the MIBG to be negative and I should have a pretty good idea from looking at the scan myself as to whether or not this spot lights up. We obviously want the bone marrow aspiration and biopsy to come back negative. I think at this point we would like for the x-ray and MRI to show a fracture or nothing at all. A hairline fracture or stress fracture would be a definitive answer to the bone scan where as anything unremarkable would leave us with out any real explanation as to the bone scan. In short, disease anywhere would be bad. A discovery on MIBG, in the bone marrow aspiration, or in the biopsy would be catastrophic.

In the end, Dr. Eames did not provide me with the answer that I was looking for but she did comfort me. She gave us a plan and a direction. She was clear. She was exact and she left no doubt. Somehow, she gave me strength. Once again, I owe her.

Yesterday afternoon Sydney had a little talk with Lynley. "Mommy, is my cancer back?" She really is wiser than words. As always we were completely honest with her.

Lynley: "Honey, we don't know. The bone scan showed a spot on your arm but we don't know what it is. We are going to hope and pray really hard that it has not come back but, if it has, you have the best doctors in the world to take care of you."

Sydney: " At school I did not want to eat lunch. My stomach was very nervous and it did not feel good. Am I going to lose my hair again? Will I still be able to play with my friends? Will I lose my hearing?"

Tough questions and there were more! Her mother would spend quite a bit of time talking to her and I would do the same. I hate that she is burdened with this. It hurts me that she is worried. It is obvious that her mother and I are not nearly as good at hiding our worry as we thought. I wish we could have kept this from her mind until we were sure. It is one thing for me to carry this on my shoulders. I can do that. But, not her. She should not be burdened by this fear. She is just a little girl. In the end, I was honest but tried to provide her as much comfort as possible. I told her that it could be cancer but that it could be something else or even nothing at all. I told her that we loved her and that, no matter what, we would get through it. We are all hoping and praying very hard.

For some unknown reason I spent the afternoon researching bone scans instead of working. It was a useless activity but I could not help myself. It was nervous energy and something to do that felt worthwhile. In the end I know a lot more about bone scans but nothing much that gives me much assurance one way or another. It took about 3 hours to figure out that although I knew a lot more I really knew nothing of value. I was simply filling time until I could go pick up the kids.

I just want to sit and hold my purpii.

Tuesday, February 12, 2008

4:41 AM 2/12/2008

Didn't sleep much and when I tell you about yesterday you will know why. In short, Sydney's bonescan had a spot. We had a couple issues with the scan and at first we had assumed that it was just because Sydney had moved her hand. It looked like she had 2 wrists on one arm which, obviously, is not a good thing. So, we reshot. Just for safe measure we pushed up her sleeves and removed the cotton ball and band aid from where she received her injection. The good news is that the second wrist disappeared. The bad news was that the spot that was higher up on the arm did not. All of a sudden it became evident that we were not dealing with movement or a spot on her clothes. At the end of the scan I rushed out the door and headed over to the clinic. I busted down the doors and hunted oncologists. (I know it sounds dramatic but I was actually polite.) I found Howrey and convinced him to x-ray the left arm. Furthermore, I had him confirm on the scan that we were talking about the same arm. I never can tell whether I am dealing with an anterior or posterior view. I am mental that way. Regardless, after a short discussion, he made the orders and we rushed upstairs for our x-ray. Following the x-ray we went home and waited.

After we had gone to sleep Dr. Howrey left a message. The x-ray images came back unremarkable. However, the final reading of the bonescan had come in. "There is a small area of focal activity along the mid-shaft of the right radius. In retrospect this activity was slightly evident on recent studies. Based on these findings we find this activity to have questionable significance. Follow up with radiological film may be helpful."

Did you catch that? There are two important things to note. First off, if it is the right arm than we took x-rays of the wrong arm. I truly believe it was the left arm because of a spot that was lighting up on the right arm from where her IV was placed. Regardless, we definitely need some clarity. If it truly is the right arm we need to x-ray the correct arm and, since I spent a sleepless night thinking about and wishing bad karma on neuroblastoma in the wrong arm, I will have to stay up all night tonight thinking about the right arm. That is two sleepless nights for one arm which is completely unacceptable. Hopefully, it will still be enough. The second issue of note is the comment that "in retrospect, this activity was slightly evident in recent studies." I don't know what to say about that other than to say - I don't like that! A fluke on a bonescan is fine (well, it actually sucks, but fine when compared to a persistent spot that seems to be growing in intensity) This throws out my theory that if it truly is the right arm then it was possibly some "nuclear bone juice" that got smudged on her arm during the injection or some one time fluke in her body that the machine picked up. However, the last three bonescan injections have all been in the right arm, perhaps we have something going on that is related to drug distribution in the vein or something else. Crud, I don't know. I hate this damn disease.

So, what does this all mean. Well, first off, we will get to the bottom of which arm we are talking about. Secondly, we will x-ray the correct arm if it has not already been done. Next we will wait for the MIBG and marrows. If nothing is conclusive we can schedule an MRI. Hopefully, this will give us some clarity. So, right now, instructions, everybody needs instructions. Pray for something benign. Pray for a fluke. Pray that this is not NB. In the meantime, we will try and get to the bottom of this.

Well. I had best be off. I am heading to Dallas at 6:15 AM this morning to catch a Grand Rounds presentation on MIBG therapy of all things. It should be finished by about 9:00 AM which is before I plan to hear from an oncologist. I will post any news that I hear or plans that we make.

It is purpose time. Pray hard!

Monday, February 11, 2008

5:08 AM 2/11/2008

Good morning! Today begins scan week for Sydney. A bone scan is scheduled for today and then she will have a one day break back at school before we head back up to the hospital. We had a great weekend. (Well, right up until the end.) It all began on Friday night with a trip to dinner with the Robertson's. As you know, this is always a nervous time for me. The good news is that Truman has really grown up a lot and fears me appropriately. At this dinner there was no groping or inappropriate kissing. I was sufficiently pleased. We then made it back to our house where the kids played in the playroom while us big people engaged in some adult conversation and beverages. The kids had a great time chasing each other (and the animals) around the house.

The weather over the weekend was absolutely perfect. On Saturday both Sydney and Graham had birthday parties. Lynley was in charge of taking Sydney to a "girlie" birthday party and I took Graham to a "Pump it Up" party. Graham and 15 other 3 and 4 year olds went nuts for two hours happily bouncing, jumping, and sliding through the inflatable wonderland. This gave me a solid two hours to catch up on some very necessary research reading. I was definitely the nerd of the crowd. While the other parents chatted I had my nose in the books. I had some strange looks as I sat reading about reducing Vitamin E's neuroprotective effects. I was just glad that I had a yellow highlighter instead of a pink one. Regardless, Graham had a blast and would take a break every 10 or so minutes to come over to me so that I could take him to get a drink. Later that evening, Lynley and I would leave the kiddos with Jenny and have a real official night out.

Sunday was a bit different. Of course, with so much fun on Saturday Lynley found in necessary to send us back to the salt mines. I spent most of the morning working on my outside honey dos while the kids ran around in the backyard. The had a blast climbing trees and making secret hideouts in the bushes. All in all, I think we wore them out well. While waking from naptime was when it all changed. Ainsley woke up with a 102.6 degree fever. We immediately gave her some Tylenol and sat her back down on the couch. Within 30 minutes she had quite enough of that and decided to make her way outside. For some reason she figured that a good rousing jump on the trampoline was what was needed. Her temperature had disappeared and she was back and ready for action. The rest of the night she would act completely normal. She would not regain a temp or show any signs of slowing down. She did wake up at about 3:30 AM this morning complaining that she did not feel very well. She had a low grade fever but with a few huggy snuggles she was back on the road to recovery. Who knows what we will discover today. We may just have another at home during scan week. Only time will tell.

This week will be full of purpose for sure.

Friday, February 8, 2008

5:21 AM 2/8/2008

Wow, is it Friday already? I can hardly see how that is possible. Well, I suppose that is just how the cookie crumbles. We have a busy weekend planned, flush with parties and fun. It all begins tonight with dinner with the Robertson's. Yes, Sydney will be seeing her long lost love, Truman. It should make for a good time all around. Monday starts the beginning of another nail biting week for the Dungan household. Next week is scan week. We will lead off with a bone scan to get the week started and go from there. It will not be a particularly good week for her as it will require three separate pokes on three separate occasions. I truly feel for her.

Scans are always so difficult and I try to plan them out so they have as minimum as an impact as they possibly can. Generally speaking I always try to schedule her scans so that we can get the injections for them while she is under anesthesia. She is so entirely hard to hit this always seems to work best. First of all, she is relaxed and, second, the anesthesia dilates her veins. This saves her four or five sticks from nurses that aren't able to hit her veins. Regardless, even though we try to schedule things to happen in this fashion they never do. In fact, they give me the impression that they think we are ridiculous for asking. The funny thing is that it is the nurses from the prior set of scans that always ask us to do that. Regardless, it is a mess and even though we do are best to get things coordinated properly it always seems as though they end up scheduling it so that she needs 3 or 4 peripheral IVs. It stinks. Maybe this time after the nurse has missed her vein for the fourth time I can get her to write me a note to give to the person that schedules that procedures. There has to be a solution. Sydney is such a tough little girl but it is just torture for her.

Well I had best be off. Another day.

More purpose!

Thursday, February 7, 2008

5:46 AM 2/7/2008

Good Morning! Well another morning has slipped by. I would have figured that I would have achieved more by this point but, well, you can't win them all. This morning I am going to talk about one of the presentations that I heard over the weekend. This may eventually turn into an article so bear with me. You may see it twice. I mentioned that over the last weekend we had a board meeting and that at this meeting we had the opportunity to talk to each one of the members of our medical board to gain insight into the work that they were doing. There were many things that I was impressed with but, one of the ideas was so innovative I just could not get it out of my mind. A year or so ago, Dr. Sue Cohn left a prominent children's hospital in Chicago and joined the University of Chicago. To be honest, these moves scare me because I always fear that, when someone leaves a pediatric hospital to join an institution whose focus is not predominantly pediatrics, they will be lured away from pediatrics. I feel this way for many reasons. For one, they become a little fish in a bigger cancer pond. Secondly, I fear that they will be lured into adult studies because of their experience and successes. Ironically, there are many pediatric investigators, especially in neuroblastoma, that are wooed by adult oncology because of there expertise and successes. Yes, we as parents think that progress does not move fast enough but somehow pediatric oncology achieves more successes more quickly with less resources and manpower than many adult cancers. I digress. The point is I don't like people taking MY neuroblastoma investigators and clouding their minds with stuff other than neuroblastoma.

So, when Dr. Cohn left, I was worried. That has been complicated by the fact that I know of 2 other extremely prominent neuroblastoma investigators that are also on the move and they are moving into mixed (adult and pediatric) environments as well. This made me very nervous. Sure, they told me that they would never leave pediatrics, that they would never leave us. But, still, I worried. How was this going to help kids with neuroblastoma? Well, it was talking to Dr. Cohn that I found out.

One of the problems with pediatrics is getting new drugs into kids. It takes too damn long. First, a new drug has to be developed. The bulk of them are tried on adult cancer lines (this is where the money is) If there is activity then they do all of the preclinical testing - first in Petri dishes and then in mice and rats. At this point they can write the trial. It goes through a review process and all kinds of things that can take an inordinate amount of time and then, finally, it can go into an adult. This entire process has to occur with pediatrics as well. It is double duty. In fact, it is even more than double duty because we have to be even that more careful with kids. There are all kinds of stopping and starting rules and it takes forever to get anything done. This process can take years sometimes decades to get a new drug into children.

This is where Dr. Cohn comes in. By the way, there is actually an article on this in the January 10, 2008 edition of the Journal of Clinical Oncology. The article talks about a new trial design called rolling 6. It gives a great methodology for speeding trials by avoiding most of the stopping rules. In essence, it has the possibility of make the drugs available to more kids faster in a trial setting. This is all fine and dandy but not what really excited me. What really floored me was how she was getting drugs into kids in the first place. She does not really get into it until the last paragraph of the article but it is nothing short of brilliant and probably one of the best strategies to get drugs into kids since time began. What they have done is this. When they are testing the drugs preclinically for adults they are also looking at some pediatric (like neuroblastoma) cell lines. When there is activity they combine this data into the adult trial. They then open the adult trial. Once they achieve the maximum tolerated dose in the adult trial they then expand the age requirements to include pediatrics. First they start with kids age 14 - 17, and then younger kids, and so on. By doing this they are effectively cutting years out of the drug delivery process. They are saving dollars, man power, time, and most importantly they are probably sparing populations of children that could be potentially under-dosed. The key is that they are getting drugs into pediatrics much earlier than was previously possible. Furthermore, we get a glimpse into a drugs activity long before we would have normally. This is a huge step forward.

Now, many may say that most of the kids are too young to benefit from this strategy. For the most part I agree. However, the young children will still be likely to receive the drugs much earlier than normal and with a better indication and more refined dosing. It stands to benefit them as well. Secondly, it is also important to note that many of the kids that relapse are much older and could benefit directly from this strategy. Finally for the group of older patients that we have right now like Erik, Anna, Joe, and Nick. These are great options for them, right now. In this sense, they will be eligible for so much more.

Now is this system perfect? No. Is there potential for problems? Yes. But, I can tell you for sure, this will speed quality drugs into children with neuroblastoma and is doing so now. Kudos, Dr Cohn! Thank you for staying with us.

Purpose comes in the strangest ways.

Wednesday, February 6, 2008

5:32 AM 2/6/2008

I guess I am just not cut out for being a member of a jury. I wonder if it is my brooding manhood or perhaps the intense glare illuminating my intelligence. No. Well I guess it is the fact that I have 3 kiddos under the age of 10 to take care of at 3:00 PM. I was in and out of jury duty in less than 30 minutes and most of that was spent waddling in the line to get through security. Now don't get me wrong. I don't want to shirk my constitutional right and duty. I just have bigger (or smaller) fish to fry. Regardless, I was really glad to get back to work and focus on many of the items that I had lying in wait. I am still waiting to truly process all of the information that I learned over the weekend. Truth be known, I have mountains of research to get through. It is literally 3 inches thick and every page will need to be read in detail. Just to give you a glimpse of the fun kind of reading this is - I am reading up on a new trial design called the "rolling 6", Dr. Cohn's new methodology for getting drugs into pediatrics, DHA (again!), Vitamin E and neurotoxicity (and ototoxicity), adaptive cell therapy, a new vaccine proposal, and several new drugs that are going to be coming out this year. This does not even begin to touch the surface on the things that I would like to be reading. Humph. I am a nerd.

Well, the kiddos survived the day but, just barely. For some reason Sydney came home with a green sticker. A green sticker is a sign of misbehavior. Looking closely at her notebook I could see that she had thrown a rock at someone. Well, Sydney said it was a bottle cap which is somehow supposed to make it better. Regardless she said she was "playing" with another child. I find it hard to believe that her teacher would give her a poor mark just for that. I will be stopping in before school to get a handle on what happened. Regardless, Sydney spent the entire night working. That is the punishment for not bringing home a blue sticker - an entire night in the Dungan salt mines. Well, that and hours of homework and reading. There is no playing and no fun allowed. It seems to have a pretty good affect. They get a good grasp on the entire weeks work and they remember (for a week at least) to be good and concientious in school. In all due fairness though, Sydney does not think it is such a fabulous system.

The great news is that all of the twerps appear to be on the mend and I finally got a good night of rest. I am ready to start the week all over again.

Purpose, let's go!

Tuesday, February 5, 2008

5:47 AM 2/5/2008

Well crud! Here it is 5:45 AM. I have been up for 2 and a half hours writing email and I am no where near being where I need to be. On top of that I have the joy of having jury duty today. I am sure there is something illegal about this but I am quite sure that, whatever trial I am on, the guy is guilty. Unless of course, it is a medical insurance case in which case the insurance company would not be guilty until I made it on the jury. For all of those that read my diary and work for a medical insurance company (I know there are a few) I apologize for the insult. However, I think you can understand where I am coming from. And yes, I am still in legal battles with BCBS who refuses to cover medical expenses for a myriad of ridiculous reasons. For the record, I am not doubly insured nor have we ever been. I do think anesthesia is necessary for surgery and yes, in 2004 the doctors ordered TPN for my daughter while she was coming home from transplant (because she was not eating) and I think that should be covered as well. I am picky that way. Oh, and just so you know, yes, I continue to fight for coverage for the 2 years of treatment at Sloan Kettering which has not been covered for my daughter even though it has been covered for other children with the same policy from the same state.

Wow, where did that come from. Man, I have issues. Regardless, let me tell you about something happy. Yesterday I took my blushing daughter Sydney to her first speech therapy session for this semester. We were running a few minutes late as I had just come from a local meeting of neuroblastoma parents that ran a bit long. Regardless, Sydney and I raced in five minutes late. Her new therapist greeted us at the door. They made it back to the therapy room and I made my way into the dark hallway to listen in. In between the two rows of therapy rooms there is a long hallway with two way mirrors through which we can watch the therapy sessions. There are also several places to plug in headphones to listen in. I generally listen in but pay little attention unless necessary. This is a great quite time to review research literature, etc. However, this first session was all about testing her pronunciation and retention so I paid particularly close attention. I was amazed at Sydney's improvement. It blows me away how far she has come. She is doing so well. In just the last 4 months she has gone from completely missing Ss, mispronouncing Ls and Rs, and several other issues to completely nailing those sounds wherever they appear in a sentence. It was night and day. I was blushing especially as I met with the advisor. She was doing so much better. I had noticed this when listening to her peers at school. She had caught up and even surpassed some of them. There are areas that need some improvement. She has some trouble when THs appear in the middle of a sentence and some of her Vs sound like Bs. When not paying attention to her speech it also became evident that she tended to use SH sounds when Ss appeared in the middle of sentences. In other words, the word "lessens" sometimes sounds like "leshens." All in all, she still blew away my expectations. I was so pleased with her growth. The change has been dramatic.

Well, I had best be off. The other rugrats have begun to stir and I still have a mountain of email from yesterday to get through.

Purpose overfloweth!

Monday, February 4, 2008

5:51 AM 2/4/2008

Good Morning! Although I have been awake for some 2 and a half hours this morning my brain still has that feeling that it is not quite there. The days following a CNCF board meeting always seem to do that to me. My mind continues to reel into oblivion. It constantly wanders and focus on any one thing is quite difficult. I think this is all a relatively good sign though. It should tell you that I heard so many good and promising things that my brain has been shocked into some form of malfunction.

First off, I was incredibly happy to get back home to see my kiddos. We missed each other appropriately. On Friday, Lynley took the kiddos to see Dr. Debbie. You may remember an ongoing condition with Ainsley that had left her out of sorts. As it turns outm she had scored one raging ear infection. She is now drugged and improving. She is still a snot but I don't think that there is any amount of drug that can fix that. Sydney also scored on the sickness scale. It turns out that she has an infection along with two enlarged painful lymph nodes. They are on both sides and we are pretty sure that this is related to the infection and not to anything more sinister. The good news is that by the time I had got home she was already on the mend. The Grahamster was just glad I got back home and was ecstatic to dig through my bags to find whatever I had brought him.

So, why was the meeting so shocking, so tiring, and so disruptive to my gentle psyche. Well, it was because there was so much covered. There are a ton of projects moving forward within the CNCF. All of which are exciting but all of which are also very involved. There is much to do. On the horizon there is much more for parents and families with neuroblastoma. There will be more articles, more conferences, more videos, more webinars - more, more, more. So, in moving all of this forward it creates a lot of work and a lot of responsibility. With our organization not being huge in the man power department much falls onto the shoulders of the board and people like myself to get things done. As you may have guessed, I don't have much time to do much more so I have to figure out how I am going to squeeze more into a day. Since there are no more hours, this means I have to free things from my schedule. I have to figure out what I can get off of my shoulders to let me concentrate on what is more important. I won't ever stop talking to families and meeting with them and as my schedule continues to be more and more filled with that type of activity I have to be very clever with what I fill the remainder of my time with. It keeps me in quandary.

The other tremendously exciting thing that came out of the meeting was our one on one conversations with our medical advisory board. This may not sound like much to the casual observer of my diary but, trust me, this was one of the best experiences one could ask for. I essentially had a 5 on 1 opportunity to hear about cutting research first hand from the leaders around the country. We talked to Dr. Sue Cohn, Dr. Ro Bagatell, Dr. John Maris, Dr. Darrell Yamashiro, and Dr. Nai-Kong Cheung. We received insight into their research and direction and I can tell you that there are some promising things on the horizon. I was impressed with some new drugs out of Sue Cohn's lab but most impressed by her strategy in delivering them to our kids. She has devised a methodology for moving drugs from adults to pediatrics much more quickly than before and is giving us opportunities to get drugs into our kids years prior to previous methods. Her strategy was published in the Journal of Clinical Oncology and it is quite interesting. I find tremendous value in this methodology and I am excited about the possibilities that it brings to the table. One of the other items that came as a huge surprise was a discovery out of Maris' lab. I previously had heard nothing about the new drug (antibody) in neuroblastoma. I can't speak for it's use in neuroblastoma yet but can tell you that they report the preclinical data to be "unlike the have ever seen in neuroblastoma to date." This along with a slew of other drugs and options are all slated to become available to our kids later this year. It seems like all of this work in spending so much time looking at all of these targeted agents is finally coming to fruition. I was also intrigued by some research coming out of Sloan Kettering. There is a new adaptive cell therapy strategy on the horizon that seems very interesting. This is beyond the work on the 3F8 antibody, 8H9, or the upcoming anti GD-2 vaccine and, in my mind, is probably the most promising if you are talking about impacting lives. Regardless, it was a very interesting meeting and, as you can see, my mind is bouncing all over the place for good reason.

Purpose overload!