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.

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.

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.

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.

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!

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,
Mark

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.