No worse than worse!

Good morning! Well, the news is in and, thankfully, it is exactly as described. Both the MRI and bone scan are noticeably worse but the area of concern appears to be limited to the site of the biopsy. In other words, something continues to be there. It appears to be worse but they are blaming it on the biopsy that we had in Houston. No other lesions where found and it does not appear to be growing rapidly, if at all. Additionally, we can now rule out infection from our list of possible causes. The biopsy was in the right spot and due to it the cortical bone was penetrated. The infection did not take off as we would have expected. So now we have pretty much ruled out both infection and injury. That leaves "malignancy" and "fluke" on our table of potential causes. Finally, if all goes well with the MIBG they are planning to change up our scanning schedule - every 6 months with a 3 month MRI bonus! I don't know if I am down with that, especially without a differential diagnosis, but I will worry about it when I need to - which is not right now.

Today Sydney has her injection for her MIBG scan. Unfortunately, the peripheral IV that she worked so hard to preserve, blew yesterday morning. For this reason, she will have to go through the process of having another IV placed again today. We know it is going to be tough for her but we are hoping that it goes more smoothly than two days before. Today we will let them use her right arm which has a much better track record of success. I really do not want to see a repeat of what we saw the last time.

Yesterday we really had two things to celebrate. While it was tremendous news to hear Sydney's scan results we can't go through the day without announcing a very important first for one of our other Dunganlets. It seems that Ainsley made it through her first entire day at school without a diaper. Yep, it was her first attempt to go to school with big girl underwear. Not only did she go to school in her green and pink polka dotted underwear and green jumper but she came home in the very same pink polka dots and green jumper. It seems that we have crossed a huge milestone in the Dungan Journey. Having spent my last 7 years with at least one child in diapers I really don't know what to say for myself. It seems so strangely foreign. What will I do with all of my spare time. Honestly, as much as I am proud and happy, I am also a bit sad. Our last baby is all grown up.

Well, I had best be off. There is much to be done. Hopefully, for both of my girls, it will be an uneventful day. I think I will say a little prayer.

A breath of purpose

7 Sticks

Yep! It took 7 sticks to start an IV on Sydney. She was an incredible trooper even given the horrible situation. The good news is that we had the absolute best in the business trying every time. She was just that difficult to hit yesterday morning. Almost as quickly as they hit every vein it would blow. It goes without saying that we elected to keep the IV for 2 days while we wait for the MIBG injection. She will have to go to school with an IV in her arm but we think it is well worth the risk to keep her from having to through that little episode again.

I guess everyone is probably wondering about the results. Well, we still don't have them which is surprising and a little scary. It tells me that there must be some discussion going on. I have no idea what the MRI will come to show. However, I can tell you that the bone scan was certainly worse. Quite frankly, that was pretty much expected. We were expecting it to come back a little bit more pronounced due to the biopsy that she had about a month ago. The good news that came out of it was that we did not see any other spots lighting up on her bones. We were, obviously, very pleased for that. That was the purpose of the scan. The question then becomes "how much worse was it?" and unfortunately I just have no frame of reference to compare. It was worse. I don't know if this was an appropriate amount of activity to see related to the biopsy or if was more than expected. Unfortunately, I fear the latter. The spot of the biopsy was certainly more vivid but I am also pretty sure that the surrounding area of uptake was both larger and more pronounced. Unfortunately, I don't have the scans in front of me to compare so I have to go off of memory. Regardless, I am pretty sure that I am on the money.

The other concern that I can not seem to get from my mind is the fact that we put her into another position to take another shot of her arms. I don't know why. At first, I was led to believe that they were trying to get another angle that was comparable to a previous scan but that did not turn out to be the case. I fear that he saw a spot that I did not and he was actually trying to get another picture of it or more clarity. That is the worst fear.

For as bad as all of this sounds it is all just speculation. It is just the crazy stuff that goes through your mind when you are in the midst of this journey. Hopefully this morning will bring some clarity and some peace.

With hope and prayers,
Mark

Praying hard!

Okay, today is it. It will be a long day for Sydney. We are due at the hospital for the MRI at 6:30 AM. Her bone scan will be at about 2:00 PM. It is hard to believe that in less than 8 hours we will be either breathing easy or thrust back into terror. It is surreal.

I am praying and hoping - with purpose!

Dancing in the rain - backwards like everything else

Good morning! There is nothing quite like a nice warm rain to put a smile on the faces of my kiddos.

By now you may think that my children have some kind of weird fascination with changes in the weather. The last time you saw them jumping around in circles it was during the last snow. While I would never put some type of mental imbalance past my children (hereditary - not my fault), I honestly think this is one of the most wonderful things about the vision of the world through children's eyes. I am amazed whenever I get out of touch with it for a little while. It is that simple joy that just comes from living life. In this case, it was the first warm rain of the year. When was the last time you went and danced in the rain?

Yesterday we received Sydney's latest report card. I am happy to report that she has mastered nearly everything required of her kindergarten. I was both extremely pleased and a bit worried. Sydney is doing some things very well. Her math skills are really impressive. There is no doubt in my mind that the synapses are firing. She is adding and subtracting, telling time, counting money,identifying, sorting, and organizing by shapes, color, and size. She can establish patterns and compare by length, capacity and weight. She can count by 10s, 100s, 1000s, or even 1,000,000s and claims that she can count to infinity. She can even identify and model fractions. I tell you, she is a whiz. Now, what she can not do is write her numbers from 1 to 20. Isn't that odd? She can do all kinds of sophisticated (for a 6 year old) math computations correctly and gets them right 99% if the time. She can add two digit numbers. She can add a whole column of numbers together. What she can not do, however, is write the answer correctly. For example, if the answer is 3, she will get it right, however, then number will more than likely be backwards. Yes, nearly all of them and they seem to be backwards almost as often as they go forwards. Personally it drives me nuts and I don't know how to help her. I am also seeing the same pattern with her alphabet. In language as well she can do some incredible things but, once again, I will frequently catch her getting her bs and ds switched or making an s in reverse. It is odd to the point that I am wondering if we hit on one of the neurologic side effects of all of the chemo that she has been through. She has mastered such intense and difficult concepts yet she seems to get hung up on such a rudimentary task as actually writing the correct answer. I guess I can't say a whole lot. I work so fast I often skip right over whether I am using the appropriate there or their or even write or right. I am just in a rush and forget to check. Maybe Sydney's issues is actually less neurologic and maybe a bit more hereditary-logic. Regardless, we will continue to work but it does have me a bit worried.

Finally, on Monday Sydney begins another week of scans. It looks like we will need to be there so early that I probably won't have an opportunity to write. It will be a very tough day both for Sydney and ourselves. While I am hoping and praying for something will tell us that the spot on her arm is not neuroblastoma, I know that is probably unlikely to come from this scans. Unfortunately, I know it will just add to the worry. For now I am going to pray that the spot have improved. It is a long shot. But please, God, just don't let them spread.

It is my purpii.

Twerp "stuff"

Good morning. This will be a very quick update. I am running late this morning. The good news is that there is no high drama to report. It was a typical day for the twerplets. I would love to say that they were all good and wonderful but you should know by now that there is nothing typical about that. Instead they were full of all of that "stuff" that makes them so special. What is that you ask? Well, for example, this "stuff" is what makes Graham not take a nap at school because he is far too giggly. It is the same "stuff" that has him sneak into one of his teacher's cabinets at school. But the "stuff" does not stop there. This "stuff" is pervasive. It is smart. It also tells him to be very quiet and not to answer when the teacher calls his name. It is this "stuff" that makes the entire school go frantically nuts looking for Graham. Now, the good news is that eventually they would find him but I would not be honest if I did not say that the "stuff" nearly prevailed.

This is the stuff of which purpose is made.

Unclean Purpose

Good morning. Well I am happy to say that we finally have our scans scheduled for next week. On Monday we will have a MRI and a bone scan. On Thursday we will have our MIBG. It seems we still have plenty of time to get nervous before then. There is not a tremendous amount to report other than that. Yesterday was a perfectly normal and typical day - which, in my mind, is pure perfection. The kiddos went to school. Lynley and I went to work. Soon enough it was all over and time for us to rendezvous back at the house. The kiddos performed their usual stunts out in the backyard and we were eating dinner and ending the day. We did have a special treat after dinner. On occasion, after dinner we load up as a family and head out for a treat. Today it was ice cream.

Now the irony in all of this is that (a) we told him to be careful and (b) not to make a mess. This was Graham's version of not making a mess. You see, we stopped at the park to eat our ice cream because we didn't want to make a mess. We were driving in a rental car (Lynley's is being repaired) and we didn't want it to be completely destroyed. Ironically, you can not smoke or have pets in a rental car. The true irony is kids are far more destructive to a car's interior than either of those. They are mini disasters in a major way. There was little to clean him up with before we left to go back home in the car. This picture was after I had already used 4 napkins on the boy.

Isn't this what purpose is all about?

Diary Hiatus

Okay, okay! So it wasn't actually a real diary hiatus. We are in the process of moving the website to Blogger and it hasn't gone exactly perfectly. Couple that with a surprise root canal for me on Monday morning and you can just guess about how happy I was about all of this. Regardless, I have been put back together and I think we have got everything working for now. So what do I have to say for myself?

Well, first thing, I should tell you that all of the children survived the weekend - some of them even happily. Everyone made it through relatively healthy and unharmed. The only kind of shock that we received came on Saturday evening. We finally received the FISHing report for NMYC on Sydney's biopsy. After all of that work I can finally tell you this - INCONCLUSIVE. Technically this is neither good nor bad - simply annoying. It really does not mean a thing other than that they could not get any results from the sample. This is certainly better than an absolute "Yes it is disease" and only slightly more meaningful than a we could not find anything. Regardless, I will take it.

The big surprise that came yesterday was a front page article on the Lunch for Life Cookbooks in the Fort Worth section of the Fort Worth Star Telegram. I knew the story was coming but I just did not know when. Surprise, surprise. It was yesterday. The article was extremely well written and appeared to drive home the important points. I was very pleased to see the world "neuroblastoma" in caps. It was certainly there out in the open. One small step for the author, one huge step for pediatric cancer kind. It was awareness. Here is the article for your perusal.
http://www.star-telegram.com/local/story/553255.html. I am very thankful to Susan Tallant for writing such a great story. Thank you.

Well, I had best be off. It is time to play catch up to a lost day.

Purpose back in overdrive.