Tag Archives: Pilomyxoid Astrocytoma

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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New Biopsy Information

We met with Dr. Packer today. Without going into too many of the grueling details, let’s just say our appointment was riddled with hard evidence for Murphy’s Law. It started with us needing gas and finding the closest gas station completely shut down, and it only got worse from there.

After stumbling through the obstacles and afflictions, we finally got to see Dr. Murphy, I mean Dr. Packer (I actually typed “Dr. Murphy” the first time, almost deleted it, then decided to keep it that way). He was a really nice guy, and Sophie liked him a lot. At first he examined her. He said she looks great. Then he pulled up her recent brain scans and showed them to us. He also relayed the official radiologist’s reading of those scans – all clear.

In looking to get more information about PMA, the type of tumor that we were told was removed from Sophie’s head, I asked a few questions. His response to my questions was simple and it was unexpected.

Sophie didn’t have a pilomyxoid astrocytoma removed. We had been misinformed. Dr. Packer pulled up a document that resembled a long email exchange. It was the pathology on Sophie’s tumor. In it were notes, comments and explanations bouncing back and forth between the Children’s Hospital biopsy lab and Dr. Burger (the man who, with his team, named PMA as a new type of tumor over a decade ago). Last we were told in January, Dr. Burger believed Sophie’s tumor was a pilomyxoid astrocytoma. Dr. Packer told us that Dr. Burger had not been happy with the result, and had gone back to have another look at her slides.

It turns out Dr. Burger couldn’t place Sophie’s tumor squarely into any category. He ended up making something up.

Now, before you cry foul, remember that pathology is more of an art than a science. To categorize a tumor cell, you have to look at it under a microscope and decide how mutated it is compared to the healthy cells it originated from, then rate the level of mutation on a scale of one to four. This is a highly subjective and imprecise process – an art form. If anyone is going to make up a category to put a tumor in for my daughter, I think Dr. Burger is a good candidate. I’m not one to say who the best is in his field, but Dr. Burger has literally written the book on the subject, and I’m feeling rather inclined to believe him in these matters (Dr. Packer appeared to have the same level of confidence in the new pathology from Dr. Burger).

Essentially, Dr. Burger is now saying that Sophie’s tumor (if I recall his words correctly) was a grade two pilocytic astrocytoma (PA). The explanation was that the tumor appears to be a typical PA (the low grade form of which is the most common pediatric brain tumor and is generally harmless once removed) with slightly more aggressive mutations, which is why he is calling it a grade two PA. This is also why we will still be getting MRIs every three months this year rather than every six months (as would be the case in a normal PA patient).

Of course, I may not have understood exactly, but that is what I took away from the meeting.

As time goes on and each time we meet with the doctors, we will continue to learn more. For now, I’m relieved that her tumor was (probably) not PMA. PMA sounds a little frightening as there is evidence it may have a higher mortality rate than other astrocytomas.

I should also note that the Children’s Hospital biopsy lab was thinking her tumor may have been some kind of glioma (I think, but I can’t remember), but they were so uncertain that they deferred to Dr. Burger – the expert.

On a personal note, judging from his photo, I think I would like to meet Dr. Burger. He seems like a very interesting man.

Finally, I asked about the research opportunities that were taking place where Sophie’s tumor cells may be of use. Dr. Packer told us that, just recently, an agreement was made between several large hospitals regarding pediatric brain tumor studies. In the agreement, the Children’s Hospital became a major supplier of samples, and another hospital (I can’t remember which one for sure, may have been Johns Hopkins) will be conducting in-depth genetic and other analysis of the cells. In fact, if Sophie has a recurrence, they will immediately perform a detailed genetic analysis of her tumor cells and, in Dr. Packer’s words, “they will find [Sophie’s] cute gene in there somewhere.” For now, we were assured that her samples are already part of the studies.

Sophie liked Dr. Packer so much that by the time we made it to the car to leave, she was chanting, “Doctor … PACKER!” Eventually she said it so smoothly, it sounded the same as if you or I said, “Dr. Packer.” It’s really cute to hear her say it. If you ever call, be sure to get her on the phone to say, “Dr. Packer” for you.

As always, watch this space for updates when they come.

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Filed under Sophie PMA, Supplemental

New Feature

Well, in the technology world this wouldn’t qualify as a “new feature,” but for this blog it’s a significant bit of information.

I’ve begun categorizing posts separately that contain significant information or updates related to Sophie and her Pilomyxoid Astrocytoma (pediatric brain tumor). If you have come looking for information related to her journey, please use this link to view only those posts:

https://brhaddad.wordpress.com/category/sophie-pma/

I’ll add a link to the side bar for quick reference.

Keep in mind: When using this category link, only the summaries of the entries will be shown. To read the full entry you will need to click on the title!

Thank you all for the immense love and interest you’ve shown through our rough times.

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Filed under Site Changes, Sophie PMA, Supplemental

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