Tag Archives: follow up

Five Month Radio Silence

From Family 2011

It seems I suddenly became a terrible blog administrator. I was doing fairly well for quite some time, only missing a month or two every once in a while, but then 2011 happened and it’s been five months since my last post (almost to the day!). I did do one little post on my personal blog in April, but that one wasn’t a very good one. So within the next couple of days I hope to have this one and my personal blog updated.

Going off our Family 2011 photo album, I can see that we’ve done quite a few things already this year. We’ve been to the tunnels of Crystal City, we went ice skating in Pentagon City, we’ve been to the Smithsonian, the Supreme Court, the National Air and Space Museum Udvar-Hazy hangar complex, and we enjoyed a visit from Grandma and Grandpa Haddad for Micah’s baptism. We all enjoyed our birthdays (they are all within the first four-and-a-half months of the year), Rochelle’s family had a wedding and a funeral (both of which she attended), and I may have finally decided on a career path (this is a big deal). Some friends of ours left the area, some came to visit, and we’ve made a few new ones. Overall, everyone has enjoyed good health, and we are doing well.

Oh, and I got to ride in a helicopter.

Books We are Reading

Brian

Despite the recently circulating rumors, I can read. In fact, I recently finished a book, and afterward decided it was time to catch up on the last eight months worth of magazines I had been letting pile up.

I’ve always been an avid reader of Popular Science and Popular Mechanics, the former being my favorite, and the latter having several practical elements that prevent me from being able to ignore it entirely. As a subscriber, upon the arrival of either, I would have it finished before the day’s end under normal circumstances, but with work being as stressful as it has been, I began piling them up back in August and hadn’t gotten around to reading them until this month.

For more about the book that I read, you’ll have to wait to read about it at my personal blog (that post is up now).

Rochelle

Rochelle just finished reading the Harry Potter series again. This is something she does regularly.

After finishing that, she began reading The Poisonwood Bible. It took until about the  halfway point before she really got into it, but she seems to be enjoying it quite thoroughly now.

How the Kids Are

Micah

From Family 2011

While many of you share our religious views, much of our family may not be familiar with our beliefs.

In an attempt to quickly and briefly address any questions, I will share our views on what I think are the most common differences between religions when it comes to baptism: how to do it and who should do it (at what age).

We believe in baptism by immersion for the remission of sins, as taught in the New Testament. We also believe that the ordinance should be performed by one holding the authority of the priesthood, that same priesthood that John the Baptist held (he being a descendant of Aaron, the brother of Moses).

Finally, we believe that young children, before they are accountable for their own actions, have no need for baptism since they are not yet in need of a remission of their sins. Yes, we believe that baptism is a necessary step in our journey to Heaven, but small children are innocent before the Lord. Therefore, only after they become accountable for their own sins, knowing and choosing their own actions, are they able to make the decision to be baptized.

Micah, having reached the age of accountability, decided that he wanted to be baptized into the Church of Jesus Christ of Latter-day Saints. He made this decision knowing that it was not something we required of him and knowing that he could wait to make the decision later if he should so choose.

The photo above is just moments after coming out of the chilly water.

I have to tell you, I felt bad for him. That water was cold. Preparations had been made so that the water would be warm. They filled the baptismal font earlier that morning with nice, warm water. Before dunking him in the water, we had a small service in which we prayed, sang and listened to some remarks about baptism from my father. He smeared peanut butter on his face. The children loved it. Then we all went into the room where the font is located and were shocked to find that all of the water had drained!

So, with only a little water in the hot water heater’s tank, they began to fill the font again. Of course, rather than wait several hours to fill it full of warm water, we had to settle for a little hot water and mostly cool water. We didn’t even wait for it to fill to the optimal depth. Having served a mission for our church and having done a few baptisms before, I knew that I could get him under water no deeper than my knees. So we filled the font until just after my mother’s remarks (she spoke about the Holy Ghost, a gift we receive after baptism as part of our confirmation into the Church). Then we all went back in to the font room. The water was pretty cool. Micah shivered pretty hard. With just one good dunk though he was baptized.

Because the immersion under the water must be complete, people often have to be dunked more than once if any part of them fails to submerge. Micah only had to endure the biting cold water for one submersion though. He was glad.

In addition to his baptism, he has enjoyed seeing the museums with us, he enjoyed the ice skating, and he’s been doing well in school.

Sophie

From Family 2011

Whether she’s cracking her mother up with the angry mean face, getting an MRI, or hanging out with me after work, Sophie is the brightest star in our home. She can cheer anyone up with a hug, melt anyone’s heart with a smile, or make even the angriest parent crack a smile with her antics. Undeniably, she has the cutest toes in the house, and she gives the best hugs.

Obviously, with five months having gone by, a lot has happened to tell about, but I can’t possibly remember it all. I’m really terrible about keeping a journal (these blogs are the best I can do most of the time, and we all see how well that’s working out).

In February she turned three. She is very aware of how old she is, and she knows she’ll be turning four next. She tells people this from time to time. Also, she understands relative age fairly well, tagging anyone younger than her as being one or two years old, and anyone older as at least four or five. Just recently she informed me that I am older than her, estimating my age as being four, then (seeing that I am obviously more than just one year older than she is) changing her guess to five (with an “oops, silly me” giggle).

Every now and then Rochelle and I share short little blurbs about Sophie on Facebook. Here are a few from each of us (more recent ones come first):

Rochelle:

I was watching a movie with Sophie. Two people started kissing in the movie and she said, “Look at those two people kissing.”
I asked her how that made her feel and she said, “Huhuhu, jealous.”

Sophie: Don’t sing anymore. It’s my turn to sing.
Me: Okay, you sing it then.
Sophie: I don’t know how to sing this song!

Me: We’re going on a toad trip tomorrow.
Sophie: Rearry!?!
Me: Really.
Sophie: Rearry!?!
Me:Yes. Really.
Sophie with a wistful look in her eyes: Can you take me to see the lanterns?

Brian:

Sophie (playing by herself) – “I did it! I am AWESOME!”

Sophie (holding MY flashlight): “I’m going to play with it.”
Me: “Can I please have it back? It’s mine.”
Sophie: “No, it’s mine.”
Me: “No it’s not.”
Sophie: “I’m Sophie and I’m the lost princess. It’s mine.”
I took it back. She’s getting better at this.

Rochelle: Sophie, say Wild Thornberrys.
Sophie: Wild Thornbabies. Wild Thornbabies to the sky!

As you can tell, we thoroughly enjoy having her in our family. She can be difficult, but it’s worth it.

Oh, and she’s in this video.

Also, her latest MRI looked clean again, so we won’t be going in for an MRI after three months like we had been. We get to wait six months instead.

Until Later

Despite five months worth of activity to report on, I wanted to keep this post short-ish to prevent you from taking one look and turning back out of fright. I promise I’ll try to be more regular than I have been so far this year. If you have anything you’d like to tell us, leave a comment or contact us using the contact information on the blog’s main page.

We love you all and hope you’re having as awesome a year as we are so far. Be sure to check out our Family 2011 photo album to see a few of the things we’ve seen thus far.

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Filed under Exciting, Travels

Sophie’s Tumor: Supplemental Information 2

I wanted to get this information written down while it was still fresh in my mind.

Pilomyxoid Astrocytoma

Pilomyxoid Astrocytoma Cells

The degree of our good fortune seems to increase every time we meet with a doctor. The things we learn continuously make the divine guidance we’ve experience on our journey more and more apparent.

Today we met with Dr. Suresh Magge, the surgeon who performed Sophie’s operation. One of the first questions he had for us (other than, “How is she doing?”) was if the metal detectors at the airport had indeed failed to detect her titanium brackets. It seems that he has never actually had one of his brain surgery patients go through airport security between appointments with him. He had always heard that the brackets shouldn’t set off the metal detectors, but our case was the first opportunity for him to confirm that bit of information. Understandably, most of his patients simply avoid travel for the first year or so after their operation.

He had a look at her scar, and remarked that it was healing very nicely. Out of curiosity, I had him describe the size and location of the slab of bone he removed for the surgery, as well as the number and placement of the titanium brackets that hold the bone in place while it heals. He described a hole circular in shape and approximately two inches in diameter, close to the base of her skull. He couldn’t remember if he used three or four brackets (it’s always three or four), but after feeling around a bit he found one of them for me to feel under the skin. It protruded out just a little further than I had expected it to. We’re not talking about a huge bump, but it surprised me.

We showed him how well she’s running and walking around, and he checked a few other indicators of her neural health. Overall, he was impressed with how quickly she had returned to normal operational capacities.

Dr. Magge brought up that he would like to have Sophie in for her first MRI before we meet with Dr. Packer. His remarks about Dr. Packer quickly led both Rochelle and me to conclude that this man is not only important, but is viewed with a kind of awe and reverence by his peers. He is very difficult to schedule for appointments, and it is noteworthy that he is interested in seeing Sophie. Usually he doesn’t concern himself with brain tumor patients who do not require chemotherapy or radiation treatment (these cases represent the vast majority of all cases studied). However, he has requested to see Sophie. So, our appointment with him is on the 15th of March (that was the soonest available when I made the appointment a week ago on the 19th of January).

Next we talked about the pathology report, which is one of the reasons Dr. Packer may be so interested in Sophie’s case. What everyone initially presumed had been pulled from Sophie’s cranium was a PA (pilocytic astrocytoma). PA is the most common type of pediatric brain tumor, and is given the lowest grade in the World Health Organization scale (that 1 to 4 scale I discussed last time). Thus it is considered the most benign (only slightly mutated cells), the least aggressive and subsequently the least likely to reoccur. PMA (pilomyxoid astrocytoma) is a newer type of tumor that is only recently being separated from that grade one PA classification.

Sophie’s tumor, as we previously learned, is indeed a PMA. I mentioned to Dr. Magge that I had found and read a paper on PMAs from the Johns Hopkins staff. He immediately asked if it was written by Dr. Burger. I replied that I couldn’t recall (but I have now confirmed that his name does appear on the paper). Dr. Magge explained that the paper was likely written by Dr. Burger because this man is the leading authority on PMA. Not only did he write that paper, he wrote the text books on the subject. He was also more than likely the eyes at Johns Hopkins that viewed Sophie’s slides and identified her tumor as a PMA. If you read none of the information in that last link, note this tidbit:

Pilomyxoid astrocytomas were first described by Dr. Burger and his colleagues in 1999. They recognized them as relatively rare tumors with some features of pilocytic astrocytoma, but a distinctive microscopic growth pattern, as well as a higher recurrence rate and chance of spreading within the brain.

This type of tumor is still considered largely benign and less aggressive, but it represents its own category because the data suggest that PMAs are (for some unknown reason) slightly more likely to return after removal. While the cells may have most of the qualities of a nearly harmless PA, PMA tumors, when not identified properly, can often return undetected and cause serious problems. Dr. Magge stated that the only difference going forward between a PA patient and a PMA patient is that Sophie will have MRIs slightly more frequently to watch for any regrowth.

While the Johns Hopkins Neuropathology Division seems to be doing most of the major research into PMAs, the Columbia University has set up an entire website resource with tons of information (I haven’t even looked over it all yet).

Remember, every link I provide in the text leads to additional information and reading. If you are interested or need to know more, please follow the links. I make every effort to present the information I gather in as clear and simple a manner as possible while maintaining the integrity and truthfulness that it contained when I found it, but I am not perfect. Please leave comments to add your information, ask questions, and share your stories.

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Filed under Sophie PMA, Supplemental

Sophie’s Tumor: Supplementary Information

From Cell Phone Photos

I’m not following the normal formatting for this entry because I am only posting this to provide you with the information I received yesterday regarding Sophie’s tumor.

Some of you may recall that the biopsy report we heard a couple of weeks ago was unsettlingly inconclusive. The doctor who relayed that information to me was unaware that her tumor samples had indeed been sent off to another facility for further review, and those results came in a few days ago.

Yesterday, Sophie’s surgeon called to deliver the new pathology report.

The official word is that her tumor was a pilomyxoid astrocytoma, a relatively new classification. A quick Google search revealed a lot of the same information that Dr. Magge shared with me on the phone. The best summary (that I found) can be read in the “abstract” section of this paper. I’ve copied and pasted it here for you:

Pilomyxoid astrocytoma (PMA) is a recently described type of brain tumor. PMA shares similar features with pilocytic astrocytoma (PA), the most common central nervous system (CNS) tumor in the pediatric population, yet displays subtle histologic differences. Previous studies have shown PMA to behave more aggressively than PA, with shorter progression-free and overall survival as well as a higher rate of recurrence and CNS dissemination. These findings suggest that PMA may be a unique and distinct neoplasm. This review summarizes the histologic, clinical, and radiographic characteristics of PMA. In addition, the current treatment options and research endeavors involving this disease are described. Increased recognition of PMA within the medical community has the potential to affect the treatment and prognosis of pediatric low-grade astrocytomas.

Interestingly, this paper was written by doctors at the Johns Hopkins University, the same place that Sophie’s tumor sample was sent for the second biopsy.

The tumor is considered a grade two tumor. Essentially, this is grade two in the four-grade scale that is most commonly used to grade tumors. Grades one and two are considered benign, and three and four are considered malignant. However, benign and malignant are not generally used to refer to brain tumors, as those words tend to be separated into “good” (benign) and “bad” (malignant) categories. In the brain, it does not matter if the tumor is benign or malignant. There are many benign brain tumors that can kill, and many malignant tumors that are easily treated and pose minimal risk to the individual. This is especially true in children.

The main thing to gather from the fact that hers is a grade two tumor is the likelihood that it may recur. Grade one is the least likely to return, and grade four, being the most aggressively mutated type of tumor, is the most likely to return – but chemotherapy and radiation treatments can often prevent recurrence. Dr. Magge consulted with their tumor expert and their joint review of Sophie’s files concluded that she should not need any type of treatment or radiation for the tumor as there is only a small chance that her tumor will grow again.

We will still be meeting with Dr. Magge on the 26th of January, and we may come away with more information then, but the basic plan from here on out is to have her in for an MRI once every three months for the first year after surgery, then depending on how the first year goes, we will generate a schedule for subsequent, regular MRIs. I asked him if those would be once a year, or more or less frequent, and his answer (though not specific) seemed to indicate that they would be less frequent than once a year. Again, we’ll know more after our meeting with him. Dr. Magge has also given our number to their tumor expert and we will be meeting with him (I can’t remember his name) as well.

If you have any more questions, please leave a comment here and I will do my best to answer them (you can expect an email as well if you leave a comment with a question). Most likely, I won’t have an answer, because everything I know for sure is right here. However, we will know more and continue to learn more with time. Thank you for all of your prayers, concerns and support.

**Edit**

We had our appointment with Dr. Magge, and a lot of new information is available.

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Filed under Sophie PMA, Supplemental

Home Again

From Family 2010

This last month has been a lot of fun. Sophie has been recovering superbly from her surgery, and her excitement, energy, laughter and happiness have contributed significantly to the spirit in our home.

Last week we flew out and spent a week with my parents in Arizona. They also enjoyed her random giggles, overpowering cuteness, and comical chatter. I know, you’re jealous. It’s OK. You should be. She’s cute. As a consolation prize for taking the time to read this post, I’ve added two super-cute videos of her on our YouTube channel.

Now, there are only six photos in it for now (and most of the good ones are embedded here), but I’ve started a new family album for the year 2010. I figure that some of you may be using dial-up, and a page with over 100 photos probably loads too slowly to be of use to you. So, I will do a new album every year to prevent them from getting so large.

How the Kids Are

Micah

I just have to say, Micah actually started a sentence like this today: “I can’t believe you’re forcing me to…” Now, it doesn’t matter what followed (the fact is, he was being asked to do something extremely lenient and easy, with a follow-up option to do something he really wanted to do). I just can’t believe (to use his words) that he’s talking that way to his mother.

In other Micah news, his jumping on our couch has finally paid off, and the whole thing collapsed yesterday. I managed to mash it back together for now, and once I’m feeling a bit better I’m going to wrap the broken areas up with a healthy dose of duct tape to hold it together until tax return season buys us some new furniture. We kept telling him that if he wasn’t gentle with the couch it would break one day. He must not have believed us, because when he saw that it broke, his face was hilarious. I wish I had the camera out then.

Micah dropped his jaw two times yesterday, in fact.  Later that evening he was in a bit of trouble and was being very rude (angry faces and all) to his mother and father. I carried the book we are reading at night into his room hoping his attitude had changed so I could read to him, but I was met by an angry troll face curled up in the corner of his room. So, I turned around to leave. He yelled something at me (it seems he wanted to talk about it), and it came up that he feels like his memory isn’t good enough to remember the few simple things we ask of him every day. So, I reached into his bookshelf and pulled out one of his favorite new books – a Pokemon reference book with over two hundred different pokemon in it. He’s got almost the whole thing memorized. I held it up and said, “I’ll bet you can tell me which Pokemon is number 150 in this book, but you’re telling me your memory isn’t very good?”

His eyes nearly fell out of his head and his jaw was jammed open for a moment. He was stunned into silence. Victory! I feel bad, because I used to use the same “I forget – my memory isn’t very good” argument with my parents, and I don’t remember them ever winning such a stunningly brilliant victory against me in that department. The moment was almost too perfect, and perhaps his feelings of defeat in the memory department are the driving force behind his rebellious statement this morning (“I can’t believe you’re forcing me to…”).

Either way, he seems to have realized the error of his ways from the two incidents yesterday, and it showed in his behavior a bit today. When he learns a lesson, he learns it well.

In completely unrelated news, it turns out Micah has a photographic curse. I just can’t get good photos of him. I try, I really do. He and Sophie could be right next to each other, doing exactly the same thing, and the photo of Sophie will invariably come out hundreds of times better than the photo of Micah.

Case in point: Take a second to scroll up to the top photo of Sophie playing on the rope web. Good, now look at this photo of Micah on the exact same web, from the same vantage point, at the exact same moment in the exact same lighting (no shadow caused the problem, I promise).

From Family 2010

I promise I didn’t alter either image in Photoshop or any other image editing software. Both photos were uploaded directly from the camera. It’s sad, isn’t it? I take a lot of photos of Micah, but as soon as he realizes he’s in the lens, he goes bonkers, and even if I get a decently lit and framed photo of him, I can’t post it. Either he’s blurred from moving too fast while going crazy, or his face is a grotesque mutation of the truth. So, from now on I’ll just post the photos of him that I get, even though I rarely get anything that I’m happy with for him.

Sophie

Sophie is cute. She has begun a real rambling streak, and we all love it. It can happen during play, during meal times, or whenever else she feels like it. She just starts “talking.” It sounds like talking, but it’s the most varied, random collection of fun noises and sounds that I’ve ever heard. It closely resembles what I once heard from a child (who is her age, but this was a year ago or so) who listened to talk radio with her mother all day. The baby would imitate the talk radio, and it was really funny. Sophie’s sounds area a little more varied than the noises that little baby could make, and Sophie really seems to know what she’s saying.

Of course, she’s also turned into a magnificent communicator. She tries hard to assemble whole sentences and a lot of her more recent attempts are much longer than the usual, “I like (insert something here).”

She’s more curious than ever before, thinking that there’s something interesting everywhere she can’t see, reach or be. She follows instructions really well, and understands a lot better than we thought she could.

I must say, after her brain surgery it was like watching a flower bloom. The child we thought we had opened up before our eyes and became something much more spectacular and beautiful. We are all happy for her and next month you can look forward to news about her future after the surgery as we are going to be meeting with her surgeon at the end of the month to discuss those things. For now, know that the biopsy did come back, but it was frustratingly inconclusive, so consider no news good news until we have something more definite.

From Family 2010

Until Later

On my other blog I wrote a single review for the two awesome movies we saw out in Arizona. The post is short, so if you’ve got a few more minutes, I’d encourage you to take a look.

I don’t want to overdo it, but I am too excited about it not to mention it – I’ve decided to reformat the interior and exterior design of my book, and the changes are making me feel all giddy inside (which is unusual for me). The redesign is meant to give the whole book a much more professional feel. I’m really feeling quite proud of the outcome, but the changes won’t show up in the product for a while. In the mean time the book is no longer for sale. The first edition was purchased zero times, so once I get the second edition up I’m hoping to market it a little to see where it goes. And if you own a bookstore (wink wink, hint hint) I might be possibly shipping you a couple of copies someday to see if they sell. We’ll talk more about that later though. 😉

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Filed under Celebrations, Travels, Vacation

Post Halloween Post

From Holidays 2009

After Halloween I had intended on posting photos of the kids in their costumes and such. I prepared this post to be published in the middle of November, but never actually published it. So, as the poor little post that got lost in the mayhem, here is our Post Halloween Post.

How the Kids Are

Micah

Micah was Mario for Halloween! Here’s a picture:

From Holidays 2009

You may remember last month (October) I mentioned we had been working on Micah’s lying habit. We’ve got a success story to report!

A couple of weeks after I wrote that post, Rochelle made sugar cookies covered in a kind of large-granule blue sugar. Anyhow, she had a sizable portion of the sugar that she had been using to put on the cookies sitting in a bowl in the kitchen, and when she finished making the cookies, she left the small bowl of sugar out. There wasn’t too much in the bowl (maybe a mouthful or two), but it was out overnight.

Well, as you may have guessed (perhaps due to the amount of detail I included about the bowl of sugar), the bowl was empty the next morning. I was upstairs in the shower when the following took place, but I can picture it as though I had been there.

Rochelle found that the bowl had been emptied and asked Micah if he knew anything about it. Ashamed, but honestly, he replied, “I did it.” As punishment, he was forbidden from consuming any deserts, candies or any other sugary confections for the duration of the week in which he committed the offense.

He expressed concern that I would be mad at him for eating the sugar, but when Rochelle went upstairs to tell me about the punishment, I told her to tell him I wasn’t mad, but I was in fact proud of him for telling the truth. Later I explained to him that we had been trying to tell him for a long time that if he’d only tell the truth he’d get in a lot less trouble. If he does something wrong, he will be punished consistently with the most natural consequence we can think of at the time, but we won’t ever be mad at him for telling the truth.

The experience seems to have helped. In my eyes, it was a monumental milestone in his life. Even if results aren’t consistent and permanent, this moment represents something positive we can refer back to in the future. I don’t want to cast too poor of an image on the guy, but Micah doesn’t have a whole lot of positive experiences with his behavior vs. disciplinary procedures in the past. In fact, I’d struggle to think of any. So, as his father, I couldn’t be happier that we finally have this one incident to talk about and use to motivate him for years to come.

Sophie

Sophie loved being Tinkerbell for Halloween. She loved saying “tickerteet.” It felt like magic to her. She said that “magic word” and people dumped candy in her bucket.

From Holidays 2009

By the end of the evening she was exhausted but content with her spoils.

Until Later

I’ve postdated this to publish as though I had remembered to publish it in the middle of November. Since then there have been a few posts though, so if you’re behind on our family news, be sure to navigate to the main page to see what’s new.

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Filed under Milestones, Normal Life