Time to catch up!!

9:06:00 AM Atticus Army 1 Comments

Hey Army,

Well, first off I would like to apologize that we haven't posted anything in quite a while.  We have just been so caught up with living life here in Seattle with our little family writing a blog post as half way been forgotten.  I promise we have not forgotten about our army and all the thoughts and prayers on our behalf.  Nevertheless, there is quite a bit to catch you all up on.  So, without further ado, these are the highlights.

Some pics back when Atticus had his hair! :-(

As you may all recall, Atticus needs to have an audiology (hearing) test before each round of chemotherapy.  Besides causing nausea and the blood numbers to drop, the Cisplatin that he had to take for the first 3 cycles of chemotherapy is ototoxic (causing hearing loss).  The first test that we did to start everything off was somewhat inconclusive.  It did show a little bit of hearing loss, but Emmie and I weren't too convinced that it was correct as Atticus was a bit uncooperative for the test.  But, it gave us a baseline nonetheless.  After the first round of chemotherapy, we had our second hearing test and it went much better than the initial one.  Emmie and I were thrilled.  The second round of chemo was pretty rough on a few different levels which also encompassed his hearing we found out later.

Atticus at his most recent hearing test.

His third hearing test was quite a different story.  Emmie and I were devastated when we heard the news.  After all that has already happened, the surgery, the partial vision loss, and all the side effects we have already seen, here we go just adding on another.  Luckily, the current hearing loss has only affected the higher tones very few of which dip down into the areas of speech.  So at this point, we don't have to look into anything like hearing aides.  The only problem is that the full extent of the hearing loss won't be found for about a year.  What it does mean right now is that we had to change our third cycle of chemo a bit.  After consulting with our oncologists they decided to cut the cisplatin that caused the hearing loss had to be cut in half.  This should stop any further damage and then we will just have to play the waiting game to see the extent of the damage.  For now, he is unable to hear anything above 8,000 Hz, and our hope is that it will not get any worse over the coming months.  Even so, it is very likely in the coming months that we will have to start looking into some hearing aids.

Thanks giving was great! We even got served by a Seattle Seahawk!

Was able to keep up the Thanksgiving tradition of going to a movie.

Always so sad when Family has to leave.

The next big thing is that we finally got our genetic testing results back on the tumor tissue.  After the surgery, we sat down with our oncology team and had a pretty lengthy conversation on what to expect in the coming months, and about some of the options in the treatment protocol.  One such option was whether we wanted to have genetic testing done on the tumor.  When they test the tumor they will sequence somewhere around 150 or so different genes known that cancers typically overcome in formation of various cancers.  Having an idea of which genes a given cancer has mutated or silenced can, at times, give insight into how a tumor might have formed, and give valuable knowledge for possible treatment options, or future preventable medicine a patient may need to take.

Unfortunately, ours was a bit of both.  Our tumor came back with a mutation in a gene called TP53.  Without "geeking out" I will do the best I can to portray what this might surmount to.  TP53 is, among many things, a tumor suppressor.  Its primary job is to ensure that the cell is behaving and replicating as it should, and when the cell acts out it's much like a conductor of the orchestra.  The conductor is seated in just the right spot and has the power to stop the song at any point the orchestra starts to drift.  He may call the strings to attention to fix a certain part.  Once fixed the whole orchestra resumes and the song can continue.

Much like the conductor, TP53 does not like the cell act out, or just copy away without regard to fidelity.  If you think about how many times our ENTIRE genome is copied each day it is phenomenal that every person walking around us each day doesn't have cancer!!! But that is a topic for a different discussion.  Needless to say, when there are problems within the cell TP53 knows it and can do one of many things.
   1. If there is a problem in the copying of DNA, it may call to attention DNA repair proteins to fix the problem
   2.  It can stop the growth cycle, much like the conductor stopping the orchestra, to allow other things to find and fix the problem
   3.  If all else fails it can initiate something termed "apoptosis" or cell death.

At times a cell is damaged beyond repair, and to save the host, or us in this case, it is better to let a cell die than to risk the alternative.  Often times the alternative is tumor growth.  The exact type of tumor is dependent on where this cell lives, and it's function.  It may be a liver cell, Hepatocellular carcinoma, it may be a white blood cell, Leukemia, and so on and so on.  Now, I understand that I am simplifying the formation of cancer a bit, but suffice it to say that TP53 plays a major role in cancer suppression.  An inactive, or mutated TP53 gene can allow cells to replicate and proliferate unmonitored, resulting in cancer.

Atticus Army drawing! We LOVE IT

It should be no surprise then to find that close to 50% of all cancers are found to have a mutation in this gene!  At this point you may, and should, be asking your self. "well gee, if this is so common why are you telling me all of this stuff?"  Very astute question!

The real question is where did the mutation come from.  It starts to beg the question did the chicken come first or the egg???  Or in other words did Atticus's tumor mutate the gene......... or was the gene mutated and allowed the tumor to grow.   The former (and subsequently the desired result) would be a very unfortunate sequence of events that led to this horrible childhood illness.  The latter could be a foreshadowing of what might be, and subsequently called Li-Fraumeni syndrome, or an inhibited ability to keep tumors from forming.

While Li-Fraumeni syndrome is rare, it is the very thing we are currently testing for.   Because Atticus's tumor did show this mutation it is not clear which came first (the chicken or the egg).  So we will do some further testing to see if this mutation is found systemically (in is the whole body), or just in the tumor.  We, of course, are hoping and praying for it to just be found in the tumor. We will keep you updated!

I love this little backpack!

Playing Dr. during clinic.  He loves playing with these animals, but he makes sure they are always back on his backpack.

On a brighter note.  We have been so very blessed with such amazing friends from our community back home in Pullman Wa.  They have been working tirelessly and have put together a very special Christmas breakfast to support our little Atticus with his fight against brain cancer.  They have planned it to take place on his 2nd Birthday December 10th.  It is a quite odd thing for Emmie and I.  While we will be forever appreciative of all the love, prayers, and service we have received we quite often don't feel worthy of it.  That being said, this birthday for Atticus is quite special as without the all of the wonderful medical providers we have had the joy of being served by, this is a birthday that we may have never seen.

If you happen to be in Pullman, please share and join in with them in celebrating and supporting.  This is an activity of hope, thankfulness, and joy in this wonderful season.  We can't express how thoughtful, and meaningful this for our little family, especially in this holiday season.  Sometimes in life, you need to accept help when offered, and our family and friends there just seem to know what we need during this hard time.  So.... to all of those that have offered to serve, and have donated their time and talents, and to those that attend.  Thank you from our family.  I wish I could be there to give each and every one of you a big hug.



Click North Pole Breakfast for Atticus's Army for more information.