6:10 AM 3/11/2008

Good morning! Well we have safely arrived at home sweet home. We did not leave for our trip back to Fort Worth until late afternoon. There were some issues with Sydney coming off of the sedation. I think Lynley and I both blame ourselves for letting it happen. It was certainly no fault of anyone else. Sydney is just a nutcase on narcotics. We probably should have known she would go off the deep end with any more. However, she was older now and we figured that it must certainly be related to age. She had surely outgrown the Cybil.

We were wrong and it was less about age and much more about the narcotics. This is how it all happened. She came out of the initial sedation beautifully. She was happy, cheerful, and sweet. In fact, she was already getting ready for lunch. All of a sudden she began having some waves of pain. Never having had a bone biopsy in our forearm we really had no concept of the level of pain she was in. She was being fairly dramatic and pointing to her wrist. The doctor came in to take a look at her. It made sense. The area that she was complaining about was where the muscle that they had gone through attached to the wrist. Her pain score was pretty high and we elected to give her some more Fentanyl. The pain subsided. But, all of a sudden, Cybil came out. It was like a switch immediately flipped. Apparently this was just enough to tip her over the mental edge and she went into an hour long mental funk. It was full of crying, screaming, and flapping around on the bed. There was no consoling her. In fact, there was no way of reaching her. No one was home. There was no reason in her eyes. Simply put, she was mad.

We had seen this reaction before. Way back in the recesses of our minds we remembered her difficulties with Nembutal. That drug was part of this sedation mix. In fact it was in a group of drugs that I call the "Cybil nutsoids", a whole group of drugs that send her to the flip side. Versed and Nembutal are the big ones and I think the Fentanyl was just one more feeling that was the sprinkle on top that sent her over the edge. Regardless, we were all in agreement to withhold any further drugs and she eventually came out of it. I must say that the team at Texas Children's really felt for us. We had prepared them in the beginning. We had gone down expecting anesthesia and when she received sedation we made it very clear that this was her history. I think we had all assumed that it had been a while and that she had possibly outgrown it. We were all wrong. Sydney's brain and that grouping of those classes of drugs are a big no-no for Sydney. We won't forget in the future.

We finally made our way out the door and back into the car at about 3:00 PM. We were home by 7:45 PM. In the end, it was a long day. We made a bad judgment call but it did eventually turn out to be okay. We won't make assumptions next time.

Purpose can catch you by surprise even when you think you know better.

10:19 AM 3/10/2008

Sydney safely made it through the procedure. At 10 AM the doctor came out to the waiting room and let us know that she was able to successfully obtain 5 slivers of bone from the biopsy area. According to her this should be sufficient for diagnosis. Sydney will be in recovery for 3 to 4 hours and then hopefully we will be back on our way home to Fort Worth.

Now we wait....

Purposefully!

6:26 AM 3/10/2008

Good morning! I have just a few minutes but I wanted to give everyone and update. Well, we snuck down a day early. On Saturday evening Lynley received a call from one of her friends who happened to have tickets to the Hanna Montana concert. Although this is the last thing Lynley and I wanted to attend we figured someone else just might like it. I don't know what the odds are of having a friend in Fort Worth who had tickets (and good ones) to a sold out concert in Houston, but we sure hit those odds. Regardless, we hopped into the car and made our way down to Houston just in time to attend the teenage girl frenzy on Sunday afternoon. Sydney had a blast. She even suckered me into buying her a purple wig which she wore for the remainder of the night. All in all it was a successful trip down.

This morning we are due at the hospital at 8:00 AM. Sydney is still curled up on her pillow fast asleep and Lynley is busily adding to her beauty in the bathroom. I imagine things will start to get going in full force pretty soon. I am not sure when she is scheduled under the knife but I am assuming it is somewhere near 10:00 AM gauging from times that they have restricted her diet. If all goes well we should be back on the road by early afternoon.

Today I am hoping for a smooth procedure and that they are able to sample the bone without causing fracture or too much damage. I am praying for a good sample and most of all that it is not neuroblastoma or something even worse. I am going for something benign. If you get a chance this morning send some positive thoughts in the direction of one otherwise perfectly normal, happy, and healthy little girl.

Today my purpose is focused.

6:18 AM 3/7/2008

Good Morning! I am having a little bit of a late start this morning. I woke up about 3:00 AM and forced myself to go back to sleep. The next thing I knew it was about 5:30 AM. The good news is that I did not have anything really critical waiting for me this morning. I had spent the late evening hours with my nose in the laptop studying various bone tumors. It did not raise my confidence level. Bone tumors are about as much fun as neuroblastoma. I was not delighted.

On the other hand, we had snow yesterday. It was quite wonderful for the kids and a really sharp contrast from the day before. I could not resist taking another picture. Can you believe this was only taken one day later?

I am pretty sure that this is pretty much the Mecca of kiddo-dom. I can't recall another episode of such giggly exhilaration in our recent history.
Well, here we are on Friday. Late Sunday evening or early Monday morning we will make our way to Houston for Sydney's biopsy of the spot on her arm. We are due at 8:30 and I imagine that we could be finished as early as noon. I have not received all of the details but from what I understand she should be able to walk out of there with as little as three Band-Aids on her arm. That is certainly what we are hoping for. To remind everyone, this procedure is far less invasive than the other way that they were going to go. We will be biopsying the spot on the bone scan which is slightly different than the spot found on the MRI. This is a slightly easier area to hit safely and we will not be putting her at nearly the same risks that we were with the open biopsy. Additionally, we will be sparing the spot on the MRI. If we ever need to go in later to biopsy that spot, it won't be damaged. Many have asked why we are not biopsying the spot on the MRI. Wouldn't that be the most likely spot to find tumor. Well, yes and no. The area on the bone scan is much larger so, in that sense, it is much easier to hit. Also, if it is disease we should still be able to get an adequate sample. They will be sampling three places with a radiology guided needle. We are of course praying for her safety and that they don't nick any vessels or nerves. To be honest, even after studying various bone tumors, I really don't know what to pray for. Let's just hope that it is something benign - something recoverable. There is still a chance that this could be nothing too serious. Truth be known, however, it is a long shot. Let's just pray for the best for Sydney.

I hope to write on Monday morning but as you may guess it could be difficult. I will keep everyone informed as time permits.

My purpii sure look happy up there, don't they?

5:20 AM 3/6/2008

Wow! I have so much that I could write about today. I guess I should probably start with the kiddos. They are doing wonderfully. From the standpoint of kiddo-dom I really could not be happier. Each is doing well at school and they all seem to be getting along really well together.

The weather has been relatively nice the last couple of days and they have remained glued to the outside. It also seems that they have developed some allergy to the ground. Rarely, if ever, will you see them on the ground. They are often found in the trees, scaling the fences around the yard, trying to sneak onto the neighbor's roof (yes, you read that correctly), playing upstairs in the playhouse, or jumping on the trampoline. Ainsley is the most shocking who at two can climb, scale, sneak, and jump with the best of them. They make up great games and have just a wonderful time together. Yesterday I snuck up on them to take a picture while they were playing ring-around-the-rosy on the trampoline. It isn't that great of a picture but it gives you some idea of how close they are. Also, note Sydney's hair. It is so fine that the static electricity from the kids socks on the trampoline makes her hair stand on end. You can't see the top well but I can assure you she is well framed in a halo of hair.

Like I said, it really isn't that great of a picture but the fact that they play together like this just makes my heart so warm. Think of it as my feel good picture of the day.

My mind is still reeling from the NANT meeting last week. You may remember from a year ago that I made a presentation to the NANT. I outlined several areas of concern from the perspective of parents and then lined out 9 suggestions of ways to address these perceptions. One of my suggestions was the creation of a NANT Advisory Council that was formed by those most effected by neuroblastoma and relapsed and refractory disease. I am happy to announce that they officially endorsed the group and have made huge strides to communicate and to meet the challenges we offered. In fact, they have done so much I even had to sign a confidentiality agreement regarding the meetings. For that reason I can't go into many specifics. Short of a cure, I could not have been happier. There are many new drugs in the pipeline and there are several new combinations becoming available. In fact there is only one new single agent trial that has been added and that was a drug that had produced complete remissions in adults. All of the other trials are multi-agent trials and they have continued with a meaningful effort towards creating a chemotherapy backbone suitable for treating kids with disease. They are clearly making every effort to make the current trials as efficacious as possible for our kids.

There are often two misconceptions regarding the NANT, both of which stem primarily from the emotion of having your child's life on the line. First is the realization of the incredible amount of work that the NANT puts into preclinical research. The second is that they don't move fast enough for our children. Many parents and families are frustrated by the pace of the NANT because they spend so much time studying drugs before they actually put them into kids. They have tremendously rigorous standards that drugs are held up to before they are even considered to go into kids. Many people have assumed that they are just enamored by the science - that they don't care about the kids. They have assumed that the researchers really only care about the science and not speeding the cure for the kids who are here now. Truth be known, it could not be further from the truth. The NANT has made a huge commitment to speed up research. In fact this is the standard that they hold up nearly every decision to. I.e. Is the fastest way we can possibly answer this research question? To do that they have decided to hold all treatments to as high standards as they possibly could before allowing the treatments into kids. They did this because of experience. They have all been frustrated by the amount of treatments that have gone into kids and have ultimately failed. Not only is this a waste of financial resources but it is also an incredible waste of time. It takes so much time (years) and money to put drugs through phase 1 and phase 2 trials that they have committed to only put the drugs with the absolute most potential through. They don't want to waste their time on the "maybes" They want to be as sure as they possibly can be before putting agents through trial. Furthermore, the more trials that are available the longer it takes for each one, individually, to close. There has to be a balance. It is for these reasons that they hold drugs to such rigorous standards and ultimately why the process seems so slow.

In short, I was very pleased at the NANT meeting. Unfortunately, I did not see the cure to neuroblastoma but I did come away with far deeper understanding of the problems we face. I also saw some very promising treatments in the NANT and there are much more on the horizon. There is hope and there are many very dedicated people fighting to find a cure as quickly as they possibly can.

There are many that share our purpose.

6:35 AM 3/5/2008

Good morning! I have had a bit of a late start this morning. I guess all of the traveling has finally caught up with me. By now you can probably tell that Sydney is not having the biopsy procedure today. As it turns out, yesterday, I drove to 4 hours to Houston, made the check presentation and then drove back home - all before about 3:00 PM in the afternoon. My trip to Houston actually went very well. There I was met by several others who had worked so hard to raise money for this new clinical trial. Some of the money came from the golf tournament that we had in Las Vegas but the majority came from the Lunch for Life campaigns of two families. In total, the Scaznys, Weberlings, and the Edgingtons helped raise $66,000.00 for this trial. The new induction trial aims at increasing the efficacy while reducing the toxicity of upfront therapy.

Sydney's procedure has been rescheduled for next Monday. This will be much easier on our family. This Sunday afternoon we will head down to Houston. On Monday morning we will meet with the interventional radiologist at 9:00 AM and then the procedure should follow shortly thereafter. We should be back on the road and on our way home by about noon. We probably won't know anything until late Thursday afternoon.

In the meantime their is plenty of normalcy going on. Well, I had better run. I am late and I am way behind.

A busy day of purpose lies ahead.

5:34 AM 3/3/2008

5:34 AM 3/3/2008

Good morning! It feels like it has been weeks since I last wrote in the diary. A tremendous amount certainly has transpired in the short time since I last scribbled my thoughts. I will have to cover much of this over a period of several days. First, I should tell you that my trip to the NANT was wonderful. As always, it was jam packed with information and research. I also had the opportunity to meet with many of the investigators first hand. I was extremely pleased with what I heard but I will go into more detail as the days go on. Although I tried to avoid the conversation during the consortium meeting, there was also much that transpired regarding Sydney. Quite frankly, I did not really think this was a proper venue to discuss her treatment. None the less, I was pulled aside on several occasions to discuss her care. I genuinely appreciated their compassion and interest.

In the time that transpired since last Thursday we have continued to hear good news (if not more confounding news) regarding Sydney. At this point most of the tests have been run and Sydney has continued to be negative at everyplace her marrows have been tested. This is great news. It is not proof that she has not relapsed but a very good indication that we are not currently dealing with widespread disease. I received several reports throughout my time at the NANT of her marrows continuing to be negative. There are two labs that are doing some specialized testing that is beyond the scope of what I have previously mentioned. I do not expect them to necessarily find anything and I honestly don't know if anyone would consider acting on those results if they came back positive anyway. In these cases we are operating on the very edge of science and we honestly do not necessarily know what the results would mean anyway. However, another negative result would be just that much more assurance that we are not dealing with disease.

So, what does all of this negativity mean in the big scope of things? While I am tremendously excited about it from the standpoint of continued evidence that it might not be neuroblastoma, the fact is that there is still something in her arm. This isn't fluke. This isn't some natural process that just got picked up. There is something growing in her arm. People are asking questions about a benign tumor or a secondary cancer. While the outcome is unknown we are still very much dealing with something and it could be better, as bad, or worse than what we have suspected. It is for this reason that everyone is now suggesting that we go in and biopsy the spot. Lynley and I always realized that this was a possibility but we wanted to spare Sydney some of the risks if possible. Since we have tried everything else and not found any answers it is now time to take this step. No one is favoring hanging around to see what this turns into, if we can avoid it.

The current plan on the biopsying of the spot has changed. Originally we had discussed an open (surgical) biopsy or resection. However, Dr. Heidi Russell has put forth another idea which seems far less invasive. Texas Children's has a great interventional radiologist who feels confident that he can get in and get some worthwhile samples. I am not sure of the radiology involved but they will be using an MRI or CT to guide the biopsy. In this way they will be more sure that they are biopsying the correct spots. From what I understand they are planning on taking 3 samples. Currently this procedure is planned for Wednesday morning in Houston but that may change if Lynley has anything to do with it. Bottom-line, we believe it will happen either this week or the next and I probably will not know for sure until later tonight. To throw another wrench into all of this, I am going to be in Houston tomorrow morning anyway for a check presentation. We have a group of families that have done a tremendous job of raising money for neuroblastoma research in the area and we are going to be making the official presentation of the check that made a new and exciting clinical trial possible. If we plan on doing the biopsy on Wednesday Sydney and Lyn can just plan on coming down tomorrow and we can make a mini one day vacation of it. Regardless, no one will probably know until we have already committed and I will be leaving at sometime near 4:00 AM. Updates to the diary will be sporadic.

See! I told you there has been a lot going on. It has been a roller coaster during the last few days. We are, however, moving closer to answers. Most importantly my family remains happy. We will get there. Thank you for your continued prayers.

With hope and purpose,

Mark