6:52 AM 11/2/2007
Good Morning! Well, I am happy to report that this is the first morning that I have had internet access in over two weeks. Unfortunately, I am in a rush to post the new Lunch for Life website (http://www.LunchforLife.org) and I have to run. Hopefully, I will be able to get it up some time this morning. Only time (and internet access) will tell. I am also glad to report that the kiddos all survived Halloween. It was, once again, proof that candy and sugar officially makes kids nuts (and a little - okay a lot - psycho.) This, of course, would not mean that I am calling my very own children psycho - they are more of the high energy compulsively deranged type.
Well, I do have to run. Today should be the day.
Purpose is in over drive.
5:02 AM 11/5/2007
Good morning! Well, I did it. I finally got the brand new Lunch for Life website up. It certainly did not happen without hiccups but I am proud to say that it is there for the whole wide world to see. There is still much more to come. There are many other new features that I will be rolling out over the coming weeks but I am pretty happy with my first stab at it. I would genuinely appreciate it if you would visit the site at http://www.LunchForLife.org and give it a looksy. You can even visit Sydney's personal site within Lunch for Life at http://www.LunchforLife.org/SydneyDungan. You will be happy to know that in the coming week I will be adding a photo gallery to each child's website that will include new pictures of Sydney and the rest of the kids. For those that have written me about updating her pictures, you will be happy with this new feature because I will be in charge of actually putting up Sydney's pictures. Regardless, I would be really appreciative of any thoughts and/or constructive criticism.
Well, I must catch you up with all of the goings on with the Dungan five. Most notable in recent history was our parent teacher conference with Sydney's teacher. To be honest, I really do not know what to make of the whole situation. Some issues we were aware of. i.e. she is a social butterfly and class clown. She loves to make people laugh and can often be found chit chatting and giggling with her friends. Sometimes this gets her into trouble. Her best friend and numero uno giggle partner have been separated and we are hoping this will help to keep her focus. Again, this is stuff we were aware of. There were no surprises here and we were as anxious as the teacher to find a solution for her - ah - playful exuberance. It seems Sydney is more like me than I had thought.
It was the rest of the meeting and the assessment of her academic performance that left me in a quandary. I have no clue how she is doing - and I am a pretty smart guy. It seems that schools no longer like to provide comparable grades. Apparently this would create competition and I am supposing that is now taboo. So instead of getting As and Bs we know get an 'S' for satisfies requirements. There is also an 'N' for needs improvement and an 'E' for something else. Then, after all of that nonsense, there are is series of slashes and Xs which are supposed to be descriptive of whether they can accomplish certain tasks. The problem with this system is that we have no idea of what tasks she should be accomplishing at this time or how she compares to other children in class. We know that she can do some things, she can't do others, and no sense of what it all means. Sure, I know that she needs to be able to accurately count to 100. But, does she need to know that by now or by the end of the year? Is this something that they are teaching and she has not mastered. Are the other kids doing it. Is this something that we should be concentrating on with her. There were a list of at least 50 of these little tasks and unfortunately I have no idea where or what to start. I just need a grade. I need to know how she is doing. And yet, here I am, a fairly clever guy and I am at a complete loss. All I know for sure is that the teacher said that she is a bright little girl. Great, but what do we need to do?
Does this mean I get and 'S' for purpose or an 'N', an 'X' or a "/"?
2:51 AM 11/6/2007
Wow! This one sneaked up on us. Believe it or not, today is scan day for Sydney. You may notice that I said scan day instead of scan week. Yep, that was not a mistake. This will be our first stab at our new modified scanning schedule. We have cut the fat and Sydney will only be having a bone scan and bone marrow biopsy and aspiration. That is it. We have cut both the CT and the MIBG from our normal scanning schedule. We are hoping her little body may appreciate the hiatus from radiation. Plus, this might just be the change that keeps her body from glowing at keeping her future husband up at night. None the less, it will still be an action packed day. The festivities will begin at roughly 7:45 AM with a visit to the clinic. We will then be ushered to radiology at 8:30 for an IV placement and a little bone juice for our scan later. Then, we will commence waiting and eventually we will make our way up to the second floor and the surgical waiting area. Sydney will be going under the knife at roughly 12:00. That will be followed by a bone scan a little bit later in the afternoon. It will be a full day of poking and prodding and waiting for our little girl.
The other important thing to note for all of you Texas residents is that this is the day to vote. I urge you to run down to vote and support proposition 15. This is the ballot item that will secure up to 3 billion dollars in cancer research funding in the state of Texas. Not only will this be great for cancer research and kids like Sydney but it will also make Texas the leader in cancer research. Furthermore, because of the structure of the proposition, it will also encourage private funding to match that of the government. This will effectively double the 3 billion dollars. If that isn't enough I truly believe that this will be good for the Texas economy. It will bring a significant amount of investment into the state. It is a win, win for everybody. Please, if you live in the state of Texas - go out and vote to pass proposition 15.
(this add paid for by a very desperate Dad who just wants to find the cure.)
Well, I had best be off. Perhaps, now I can sleep. Please keep Sydney in your thoughts and prayers today. It will be a long day for her and the beginning of a few nail biting ones for all of us.
See, lot's of purpose today. Today you can make a difference.
5:36 AM 11/7/2007
Good Morning! Well, I am happy to report that yesterday was, for the most part, very successful. Sydney tolerated her bone marrow biopsy and aspiration like a true champ. I have never been more proud of her. She was the perfect little girl, even when faced with some pretty serious adversity. As you may remember, IV placements can be quite a challenge for Sydney and the nurses. Over the years she has become even harder to hit. In fact, these days she is about as hard of a stick as you can find. She is nearly impossible to get an IV in. Unfortunately, I don't think anyone ever believes us. We usually get that "Oh, sure she is. (you naive parents, you don't know what you are talking about.)" This is usually followed by a couple of misses and the nurse giving up in tears. It would really be much easier on everyone if, from the very beginning, they would listen to us and bring in the specialists. As it was, yesterday she received 4 sticks before all of the nurses finally gave up. In fact, we finally convinced them to just place the IV while she was sedated. Just so you know, the sedatives usually have the nice effect of relaxing the veins and making the process much easier. Furthermore, the body is relaxed which makes the process even easier. Regardless, even after all of the failed attempts, Sydney maintained her composure and was just about the sweetest thing you could imagine. I am amazed by her strength and reserve. I would have ripped off some heads by that point. In fact, I was pretty close to that point already. All of this is really for not. It is interesting and frustrating but the important thing to take from yesterday is that Sydney made it through all of her procedures and scans with flying colors. Now the hard part is the waiting.
Another great piece of news to come out of yesterday was that it looks like Proposition 15 has passed. This is great news for cancer research and, I believe, the state economy in general. It will stimulate investment in medical research and the state of Texas. It is another reason to be proud.
Well, I had best be off. There is still a mountain of work and email to catch up on. Additionally, it is also a good way to keep my brain occupied. Hopefully, it will help reduce the usual scan week jitters. We are praying for continued clean results and good health.
It was a day that purpose won.
5:12 AM 11/8/2007
I guess no news is good news but we still have not heard anything. There is one thing that I certainly have not gotten any better about since this whole mess began. That one thing is the fact that I absolutely despise waiting for test results. Furthermore, I can't ever really explain how important getting test results is to the various oncologists that we have come into contact with. I understand they are busy saving lives. I certainly don't want them to be sending me email or calling me on the phone while they could be helping someone in the hospital. However, I think there should be a process in place to ensure that scan results are reported to parents as quickly as possible. Every result matters and to the family that has a child with cancer (at least me) every finding is life and death. It is just like getting a report card. The only difference is a passing grade means you will survive and a failing grade means your child likely will not. In my eyes, it is the most important result in the world and it just kills me to know that the answers are sitting in a computer file somewhere and I just have to wait until someone decides it is convenient enough to look at it. Yes, I know. I am high maintenance. But, come on. This is my daughter's future that hangs in the balance. I need to know.
There you go. Another glimpse into my twisted delicate psyche.
I need answers. It is my purpose we are talking about.
5:12 AM 11/9/2007
In case you are wondering, NO, I still have not heard anything. Since I spent yesterday's journal entry complaining about that, you might think that I would not spend another day whining and moaning about it. Well, sorry, that just isn't the way that it works. I have got needs. So, just on case I did not make my point yesterday. This is freaking torture. I hate it, hate it, hate it. (Full fledged temper tantrum with arms flailing and pounding on the floor) I hate to do that in such a public forum but, obviously, politely talking about my dislike of not receiving scan results was not getting the job done. Today, I will be forced to make the phone call. I need the truth.
Okay, just so we can remember what a busy day yesterday was I will give you an overview. At 8:30 the kiddos all went to school. At 9:45 I picked up Ainsley and Graham for a dentist appointment. I am happy to report that they continue to have all of their teeth. Graham's dead tooth, the one he banged on the side of the pool a few months back, has continued to deteriorate at the root. For all practical purposes though, and with the one exception, they both seem to have a mouth full of healthy teeth. At 11:00 AM I took them back to school. I then made my way over to the printer who will be doing our Lunch for Life Cookbooks. We negotiated the price and looked at some samples. After that I picked up a new printer - mine is on its last rubber footy. At this point I thought it would be nice to ask my wife to lunch so that I could update her on the days events. Just as we were being seated at the restaurant we received a call. A water main blew at the school. We had to go pick up Sydney. I immediately dropped off Lynley back at work and made my way back across town to pick up the squirt. It was now roughly 1:30. With a 30 minute commute back home and then another one out in this direction to pick up the squirts in about an hour and a half I elected to wait it out and take one twerp (or Twerp #1, I guess I should say) to the mall for a new pair of black school shoes, a walk through the Disney Store, and a new cardigan for Dad. Fully fun-filled and dapper we made our way to Arborlawn to pick up the remaining gaggle.
This was not the day of work that I had planned for but I guess it is alright. I got to spend some time with the kids and I would not have been able to concentrate anyway.
Still purposefully waiting...
4:41 AM 11/12/2007
Well, I wish I could tell you that Sydney's marrows were okay. Unfortunately, I can not. We received a phone call late Friday afternoon with the news. It appears that Sydney has some abnormalities with her marrow. The good thing that can be taken out of all of this is that they don't immediately expect neuroblastoma. The bad news is that they can't absolutely rule it out and worse yet they are suspecting the possibility of leukemia. Obviously, this really is not the news that we were looking for. So, what do we know?
Well, we know that they found a concentration of roughly 3% of her marrow that consisted of lymphoblasts. Lymphoblasts are immature cells which typically differentiate to form mature lymphocytes (a type of white blood cell). Normally lymphoblasts are found in the bone marrow, but in Acute Lymphoblastic Leukemia (ALL) they proliferate uncontrollably and are found in large numbers in the peripheral blood. The problem with Sydney is that they found an abnormally high concentration of lymphoblasts in her marrow. The good news, in this sense, is that the count is not enough to be considered Leukemia and her peripheral blood was considered completely normal. As a side note, you are considered in remission from leukemia when your marrow has less than 5% lymphoblasts. Finally, typically when someone is diagnosed with leukemia they have a much higher concentration of lymphoblasts, anywhere from 15% to 90% or more.
Sydney is somewhere in the middle. She has more lymphoblasts than are considered normal and less than a full fledged leukemia. However, with all that she has been exposed to she is at a higher risk of leukemia and this is something we have to be concerned with. This could be pre leukemia and we just can't rule that out. It will require another bone marrow aspiration and some more advanced testing to find out for sure. Unfortunately, they just did not take out enough marrow for flow cytometric analysis which would give us a clearer indication of what was going on. Another scary aside to all of this is that neuroblastoma can mimic a certain type of lymphoblast (FAB L3). We can't rule that out either. Thankfully, we can say that these cells were not found in sheets, clumped together, or appearing in rosettes (common for neuroblastoma cells) In short, we need another bone marrow aspiration to find out anything for sure but it could be much worse. Sydney's next bone marrow aspiration has been scheduled for the beginning of December.
Wow, what I downer. This really is not what we were hoping to find out but I am still thankful that they finally told us on Friday afternoon. It did take some urging to get the final call but they were nice enough to spend a considerable amount of time speaking with Lynley and I on the phone. Simply put, no one knows for sure what this means. The fact of the matter is that if you continue testing as hard and as much as we do you are eventually going to find these abnormalities that are going to slowly drive you insane. We just don't know what is normal for a child that is four and a half years out of diagnosis of neuroblastoma, with her history of treatment. Quite frankly, there is no one else like her. There is no one that has had her history of treatment. This very well may be normal. We just don't know.
Action items today are to get a hold of Heidi Russell and Doug Meyers down in Houston. These were the PI's on our vaccine trial and would have the best idea of what could or could not be going on. We are anxious to hear their take on this. It could be nothing or it could be everything. Regardless, it will be some nail biting, heart pounding days and weeks ahead for us.
With hope and prayers and purpose....
3:49 AM 11/13/2007
Okay, while I am not really closer to any kind of definitive answer, I am feeling better today. Yesterday morning I talked to Doug Myers, the principal investigator of the vaccine study. He spent quite a bit of time on the phone discussing Sydney's results and his theories with me. In a nut shell, he had no real definitive answer but he did have some more information to process. Much of what he said were things that I had mentioned yesterday in my diary. I.e. this could be normal for her. In fact, he made two pretty effective arguments that this was simply a benign occurrence, either a part of her normal marrow function or simply a small and normal blip in the history of marrow. He was still supportive of the idea of rescanning in 2 to 4 weeks and even requested some of the marrow for some further testing with RT-PCR. (I have discussed RT-PCR before but, if you don't remember, save yourself an hour of reading and just keep in mind that it is a very sensitive test.)
Now, the reason he wants the marrow is not simply out of the kindness of his heart. He does have ulterior motives and this is where it gets interesting. This is information that I did not know before yesterday. Essentially, Sydney was one of the first kids on the vaccine trial to have detectible levels of vaccine in her peripheral blood. Additionally, based on the blood that we sent down to Houston every month or so it also stayed detectible in her body for a pretty long time - more than the others, as I understand. They speculated as to why this might be the case. Perhaps, it was the activity of EBV (Epstein-Barr virus) in her body (remember EBV is what stimulates this "vaccine" to stay active) or maybe even the healthiness of her immune system. Regardless, for some reason, they were able to detect the vaccine in Sydney and continue to detect it for a longer period of time than most. To make a long story shorter, RT-PCR is the tool that they use to detect the vaccine. It may very well be that it is still active in her marrow and we are seeing it being stimulated. Regardless, this further testing will give as a clearer indication of what is going on. Either way, this was promising news on the heels of some funky marrow results. The vaccine got into and stayed with her. Interesting...
In the end, Dr. Doug's philosophies are that (a) Sydney's marrow is going through some natural processes as a result of the vaccine or (b) this is just a small hiccup in the lifetime of marrow that will most likely disappear by the next time we scan. Although abnormal for what we are used to looking at, everyone there seems to feel fairly confident that this is just a benign anomaly that will most likely disappear. Ironically, everyone knows what this could be (cancer) but they all seem to gravitate and point out the 100 other benign things that this could be as well.
The fact is we don't know. When it comes to bone marrow there is a lot more that the experts don't know than they do know. Factor in the fact that Sydney is a walking one-of-a-kind due to her treatment history and you will find that there just isn't any clear answer. Time will tell. I feel a bit better today but I am still not experiencing true signs of relief.
Still purposefully waiting for a definitive answer.
3:57 AM 11/15/2007
Good morning! Yes, I know, I took a day off. My preference would have been to wake up and write in my diary but on some days other items just seem more pressing. Yesterday was a perfect example. I woke up to four email from families that had pressing questions. I certainly understand the desperate need for information when you child is in a crunch in treatment so I always prioritize that above just about everything other than the immediate care for one of my own sick children. It just so happens that yesterday somebody left the flood gates open. It was good because I think I actually may have helped them. I have received a lot of email lately from families questioning an oncologist's choice of action in a relapse situation. In every case I believed the family to be right in their concern. I am always amazed at what some of these oncologists come up with. Regardless, I am not a doctor so I never dispense advice. What I do however is point them in the direction of somebody who does know what they are doing - an actual full-fledged neuroblastoma expert. In almost every case this has led to a change in the direction of the care of the patient and that makes me feel good. Well, scared and good. I am absolutely shocked by the lack of specific knowledge in the medical community when it comes to neuroblastoma. Bad (and I mean really bad) treatment choices are made everyday and parents generally have no choice but to trust in their oncologists. They don't want to get second opinions because often they fear some type of backlash or, worse yet, their oncologist has told them that it is unnecessary. In many cases this is costing lives and at the very least precious weeks, months, and years off of their lives and quality of it.
I don't mean to sound like I am on a high horse - like I know everything. I will be the first to admit I don't and I am certainly not a medical doctor. However, I know enough to know that this bad guidance is being offered and it is out there everywhere. I have heard from families at some of the most respected institutions in the world and trust me - most are not immune. I don't tell you this to scare you. I am not paranoid. But, somebody has to say it every once in awhile. Bottom line, if your are unsure regarding a specific course of action that your oncologist is suggesting, educate yourself. Talk to one of the experts. You will find out very quickly if you need to pursue another course of action. I am not guaranteeing that you will get the answer you want. I am not guaranteeing you will save your child's life. I am not even guaranteeing that you will get a definitive answer. But, you will receive better input and you will make better decisions for your child. In the end, it very well could save your child's life. I have seen that happen far more than once. Finally, if you have relapsed or refractory neuroblastoma, you have a questionable area on one of your child's scans, you have residual tumor, you have a tumor that no one at your hospital thinks is resectable after 5 rounds of chemo - get on the phone, write an email, get a hold of one of the many neuroblastoma experts. It makes a difference. Period. Don't be afraid.
Give your purpose power!
6:08 AM 11/16/2007
Good Morning! Wow, this week has absolutely flown by. Between a mountain of meetings and trips to the doctor for the kids the time has disappeared. I guess it is probably time for an update. Well, believe it or not, you throw out the whole too many lymphoblast thing in her marrow and Sydney is the healthiest of them all. Ainsley is currently the sicky. In fact, she is perhaps the most pathetic little twerple that I have ever heard. She seems to have maintained a good activity level. In fact, looking at her you probably would have no idea that she has anything wrong with her. However, the moment she opens her mouth, Elmer Fudd steps out and even he sounds a little hoarse. She also has the kind of cough that just makes you cringe the moment you see or hear it. It looks like it hurts terribly but in Ainsley's typical fashion she immediately forgets about it and goes back to happily doing whatever she was doing previously. We are hoping she makes a quick and speedy recovery and resists the temptation to spread it to the other kiddos. However, from her perspective, that is half of the fun of being sick. We really don't want any of them to be sick for our trip to Alabama next week. We shall see what happens but I am not getting my hopes up too high. Graham is not yet sick but the sensitive little dude is showing all of the signs of impending doom. He is crabby.
Well, I had best be off. I am guessing I will have a full day with Ainsley and we also have two school events to attend. It looks like I will have another work weekend.
Oh, big excitement! The Lunch for Life Cookbooks are available for sale on the website. The books will start shipping at the beginning of December. You can order them at https://www.lunchforlife.org/cookbook_secure.aspx.
Another day of hope and purpose ahead.
4:12 AM 11/19/2007
Well, here we go. Today begins our trip to Alabama to visit Mimi and Papa. The kids can't wait. They have not been able to stop talking about it and have delighted in counting down each and every day. We fly out this afternoon and we will be there for roughly a week. The other good news is that Ainsley seems to be on the mend. While she isn't completely cured she has gone from needing a tissue 10 times an hour to roughly once and, if the bubbles coming out of her nose are any indication, she has begun to run clear. Unfortunately, I looked at the back of my throat yesterday afternoon and can see the lovely red bumpiness that sent her to the doctor in the first place. Yes, it looks like I will be the next victim of the snotty nose club. On the bright side, Lynley tolerated it fairly well so I am hopeful to be on the mend quickly. As far as Sydney and Graham are concerned -well - thus far they seemed to have skated by this little snotty nosed catastrophe. I am less surprised about Sydney but I am blown away that Graham has not been caught by the bug. It seems like Ainsley has tried to share cups on every occasion possible with him. I mentioned in my last entry that Ainsley would love nothing more than to get the others sick as well. While I don't truly believe that is the case, I think Ainsley would be hard pressed to be any more contagious. She is a walking germ constantly touching and sharing and spreading her insidious little germlets with everything and everyone that she can. Her contagion is not shy but rather a boisterous, sloppy drunk that affects everyone and everything in the room. Although she is my princess she is much more like Tinkerbelle than Sleeping Beauty. She is not easy listening, she is rock and roll all the way.
We have not really gone any further with Sydney. Both Lynley and I are content to wait until our upcoming bone marrow redo. I have bashed it around my head so many times that I have finally come to the conclusion that it is or it isn't whatever it is and, right now, there isn't a darn thing we can do about it. While I want to believe that it is nothing I certainly know of everything it could be. I can think of just about every one of the millions of possibilities that it could be - something benign and something malignant - yet not one of those thoughts does us any good. Worrying is not going to fix this. Regardless of what it is, it will take time to get to the bottom of it and I have come to accept that. While I hope and pray during every quiet moment alone, I have given up worrying. There is nothing that can be done right now. Now, I am going to enjoy my family and our vacation.
I don't know how often I will be able to update while in Alabama but I will do my best. I will be writing every morning but internet connectivity is always the tricky part at the Fowler fiefdom. The internet at their house uses a primitive form of Morris Code that I am yet to try and my cell phone internet access is spotty at best. Regardless, I will figure it out one way or another.
Have a Happy Thanksgiving and filling of purpose!
4:24 AM 11/21/2007
Good Morning! Here we are in happy Huntsville, AL. We all arrived safely on Monday afternoon. The kiddos were all great on the plane. Well, Ainsley doesn't exactly get an A+ because she elected not to take a nap, but other than that the kiddos were just great. It was a moment of pride for me. You just never know for sure what you are going to get but the kids are getting old enough now that we are much more likely to have a pleasant plane experience. Heck, for the most part, my rugrats are always pretty good flyers. But my favorite part of every trip continues to be the look on the peoples faces as we walk down the aisle. They all have that look of pure fear and you can hear their minds quietly chanting, over and over, "Please don't sit next to me." That makes it that much more fun to ask Lynley out loud if the seat next to them is ours, even when I know it is not. Yeah, I know - totally immature. However, that is the reason I had kids. They disguise my immaturity.
The kids have had a blast since the moment we arrived. They absolutely love to explore around Mimi and Papa's house. They must make 30 laps around the house an hour. Yesterday was pretty relaxed although we still got a lot accomplished. We had our Christmas pictures taken. We reinstalled the front pillars on the mother-in-law suite. I even got to get in a few hours of work. All in all, it was a pretty good day. I can't wait to see what today holds.
A few days of nice relaxing purpose.
4:46 AM 11/26/2007
Good morning! The Dungan Five have returned from their trip to Alabama and they are all happily home. The kiddos absolutely love visiting Huntsville, AL and their grandparents. They are still reeling from all of the fun they had at Mimi and Papa's house. One of their favorite things to do on the trip was to explore around the house. Whether inside or out the kiddos always found some type of adventure. Lynley, too, yearns to live back in the south. She misses the trees and all of the beauty. She also says that she misses the mountains but I have tried to explain to her that although they call themselves mountains they are actually just big hills. You should know beforehand that this accurate observation does not go over particularly well in the South. Regardless, she loves them and would love to move back some day. To be honest, I would not mind it. I just don't know that it would ever be a possibility considering Sydney's insurability and Lynley's retirement. Regardless, the point is that we had a wonderful time and are thankful for our Thanksgiving.
While it was nice to visit, it is also nice to get back home. The kids were all happy to be back in their beds and back to their toys and back yard. Although it rained nearly all day yesterday Graham still had to climb the tree. I tried to explain to him that is was far too cold and far too wet to climb trees but what do I know. I am just a dad. I elected to (carefully) let him find out for himself. Within a minute he was running back up the porch saying the tree was too wet and his hands were too cold. He decided that gloves would be the answer to his problems. This led to a hour long search for his gloves. In the end, he could only find the left hands to any of his gloves and refused to wear any of his sisters pretty pink ones. Somehow he convinced his mother to make a trip to Target for some new gloves. Oh sure, the big softy said she needed to pick up a few grocery items anyway and off they went. The next thing I knew they were back at Dungan manor. Dudely was suited up and ready to go back outside to climb the tree.
You may remember that this whole outdoor escapade began because I told Graham it was too cold and too wet outside and that he needed to find another activity indoors. Sure enough, looking like Nanook of the north and with hands stuffed in his new dark blue, waterproof, subzero gloves, Graham was trekking back out into the yard and to his favorite tree. It did not even take 30 seconds for him to turn around and come running back with tears in his eyes. "What is the matter son?" "I have to go inside (sob), my 'glubs' are getting wet and they'll be ruined!" He spent the rest of the playing inside with his sisters wearing his brand new gloves. He refuses to take them outside because they may get wet or, worse, dirty. Yep, that's my son. Worse yet, he still thinks that I do not know what I was talking about. It wasn't too cold or too wet for him to climb trees. It was just that the gloves could not take it.
Further proof that he did not fall far from his fathers tree.
He clearly does not understand his gloves purpose. I wonder if he gets mine?
4:55 AM 11/27/2007
Good Morning! I guess the best description of yesterday would be to say that it was action packed. First off, I will not lie. It was somewhat nice to have the Dunganlets back in school. We had all reached the point of stir craziness and it was time for us to gain back some sense of normalcy. However, just as quickly as I say that, change was ushered in. It would turn out to be a day of twists and turns for Sydney. The first came in the form of a phone call to Lynley. It was the school nurse. Apparently, while Sydney was stepping down from taking a sip of water at the water fountain, she fell. Thankfully, all of her bones where whole. Unfortunately, all of her teeth were not. Sydney chipped off the corner of one of her brand new adult front teeth. The nurse commented that at least it now matched the other front tooth that had not quite come in all the way. This did not offer us a lot of comfort so I made my way over to the school. When I got there I found her ecstatic to see me. It was as if the incident had been completely washed from her mind. In fact, I had to remind her that her tooth had been broken so that she would show it to me. I am happy to report that it does not appear to be serious but only time will tell. As you know, we know have quite a bit of experience with broken teeth. At the very least she will need some cosmetic dentistry - at the most, a brand new tooth. I snapped a picture a few moments after a picked her up to send to Lynley. This is what I saw.
As you can tell from the picture the corner of the tooth on the left has been chipped away.
This was only the beginning of Sydney's day of change. The next stop was at Cook's where she would be fitted for her brand new hearing aids. Thankfully this was a planned event. Sydney's new hearing aids are quite the fashion statement. When she and Lynley picked them out, mom had some say so in what they would look like. She selected some "blond" colored hearing aids to blend in behind her ears. This suited Sydney just fine, as this was the closest color to yellow available. What Lynley did not have any say so in was the color of the ear molds themselves. Sydney picked these and for some reason she selected a swirl of yellow, orange, and red. For some reason my dear wife succumbed to Sydney's wishes. Before seeing them first hand, I could only imagine that it would look wild in her ears. I could not envision subtlety. For the record, I was right. It will take some time to get used to. When I catch them out of the corner of my eye I always feel me heart skip a beat. It kind of looks like there is blood coming our of her ears. The good thing is that Sydney loves them. No matter, Lynley is already scrounging dimes and quarters and raiding my wallet to raise the funds to have 2 new $113.00 molds made.
So, as you can see, what started out as a relaxing trip back to normalcy ended up being the complete opposite. I started the day with a healthy beautiful little girl and ended up with one that had a broken tooth and, from the right angle, blood coming from her ears. I guess the only way I am ever going to achieve normalcy for my family is to accept the abnormal as our normal. Somehow that makes sense for the Dungan five.
And my purpose has known that for a long time.
5:14 AM 11/28/2007
As I explained to Lynley on the way home, there is good news and bad news. Which would you like first? Since custom seems to lean towards getting the bad news first we shall start there. It seems that Sydney's broken tooth can not be repaired until she is much, much older. The location of the chipped tooth is situated right in her bite. If they repaired the tooth at this point it would simply chip off just as quickly as it could be put back on. We are hopeful as more of her adult teeth come in this reality will change. Eventually, once all of her adult teeth are in her bite will move and we will be able to repair the tooth with out nearly as much risk of it being chipped off.
The good news is that the chip did not get past the enamel of the tooth. For all practical purposes this tooth is just as good as new. There are no cracks and the tooth appears to be just fine. Well fine and goofy. Sydney has a perfectly healthy chipped tooth and it looks like both her and her tooth will survive this fall. With her chipped tooth and red and yellow swirl ear molds she is quite the picture. Throw in the facts that she likes to take the bows out of her hair just as soon as she is out of her mother's reach and that she seems to hit her shirt as often as she hits her mouth while eating; you start to get a fuller picture of what we end up with at the end of the day. For someone that is so adorably cute she is making every attempt to look like Oliver (from the musical) by the end of the day. It seems as though I drop off a princess and pick up a pauper.
Everybody else in the family seems to be doing just fine. Graham is about as graceful as Sydney. Ainsley, on the other hand, could walk the tight rope blind-folded as long as she got to pester her brother when she got to the other side. I am amazed at her grace. She is two and carries herself better than her mother or I. It is all give and take however. She is also sneakier than her mother and I combined and I have learned to never put anything past her. In the end I have the urchin, the kind hearted sole, and the sneaky twerp. It is a mad and diabolical combination.
I am hopeful that we will have the rest of the week without any incidents and some time to achieve some normalcy. Next Monday marks the beginning of our hell week. On Monday we will be redoing Sydney's marrows and with our recent history this once again falls into waiting for a life or death phone call. I can avoid thinking about it for now. I have time to enjoy my family. But when it is here a have a sneaking suspicion that I will not be able to think of anything else, let alone breathe.
With hope, purpose, and a moment to relax.
5:28 AM 11/29/2007
Good morning! I am ecstatic to report that we made it through an entire day without a minor medical catastrophe. Yes, you heard me. Yesterday, no one in our family had a doctor's appointment. A Holiday Miracle? It sure seems so but I am holding out any official declarations until next Monday. I certainly don't want to use my Christmas miracles up too early especially considering the tests looming on the horizon. It is all fine and dandy to joke about what a pain in the behind all of this little medical nonsense has been. I understand how lucky we are right now. I know what real medical nonsense feels like. This is fun to complain about and make fun of but don't think for one second that I am complaining. I make light of this stuff because, in the big scheme of things, this is nothing. It is an inconvenience. It is like swatting an annoying fly.
I say all of this because we are getting back to the time to get serious. Both Lynley and I have begun to notice the change. We are sensing our inner fears rising to the surface. It amazes me that after all of this time we have not gotten better at dealing with the emotional impact of the worry. Then again, I don't know necessarily that it can ever be "easier" to fold your hands and quietly wait to hear if your child is going to continue to live carefree or whether we will receive news that she is facing the end of her life. At the end of next week will Sydney be playing with her friends at school or will she be laying in a hospital bed receiving chemo? At the end of the year will we she be in the ballet recital or fighting for her life in the bone marrow unit after an allogenic transplant? Will she see her 7th birthday? As a parent you just can't stop wondering.
It literally feels like I am just a few days away from gambling my family away. We are going to sit at the table, bet our lives and leverage everything, lay down our cards, and wait to see if the dealer beats us. It is an unkind feeling. I think I am more worried about this series of tests than I have been in a long time. I don't know that it is a rational fear. I think my emotional investment is probably due to the fact that we are entering an unknown. This isn't normal. There is a great unknown and even though it sounds unlikely that a secondary cancer will be found it still scares me. It is that simple. I fear the unknown. I fear the change. I am out of practice.
I guess I just need to get back to letting my purpose guide me.
5:51 AM 11/30/2007
Good morning! Not a lot has changed since yesterday. Lynley and I are quickly succumbing to our worry warts and are now almost completely covered. I know it will be much worse next week but hey, this is what we are stuck with. Sydney is not making it one bit easier. Yesterday she went to the school nurse complaining of arm pain. The nurse called Lynley to ensure that it was okay to give her some Tylenol and gave her a pretty good dose of worry. She immediately called me. It was not as though we were going to do something. She just needed someone to hypothesize with. The day before Sydney had complained about the same thing to me, however, the story was a bit different. The nurse said it was only her left arm. Sydney had told me that her condition was bilateral. Well, okay, she didn't say "bilateral," she said she had arm owies on both sides but that really isn't the point. The point is that she had pain on both sides and she had complained that it was in her joints, under her armpits and in her elbow - well - pits. I was actually pleased that it was on both sides. Although I realize cancer can make your joints ache I am always more scared of pain in a single spot. To me, that always screams tumor. Regardless, we had differing stories and we would have to wait until the end of school to get to the bottom of it.
After school I picked up Sydney as usual. I decided not to lead her in any direction and, therefore, did not bring up the arm incident. I figured that if it was that big of an issue she would bring it up. After 10 minutes of discussion she did finally bring it up. She described that her arms (arms, did you see that?) hurt and that she couldn't play some game. As her story went on I became intrigued by the fact that it started in the past tense and was changing to the present tense. As she talked, the description became more intense and animated. As I asked her to describe it she described it as bilateral and in the same places as the day before. However, she was really starting to get into it now. There were dramatics and screams. She was clearly trying to convince me she was in pain. As I drove and showed interest it got worse and worse. As we neared Graham and Ainsley's school I changed the subject. We got out of the car and I decided to test my theory. I started skipping with her holding her hand and swing my arms wildly. I spun her in circles. I did everything I could to stress her arms and joints without her knowing. All she did was laugh and have a good time. It was the most amazing transformation I have ever seen. Either she was faking it, making it worse than it really was, or she had a miraculous recovery but I am leaning towards one of the former.
Regardless of all of this nonsense, I still don't like it. I don't like it at all. I am just hoping for a fun weekend that we can all enjoy. On Monday we are back at the hospital.
She might be faking it but I am not. Come on purpose. Let's get through this.