Saturday, November 28, 2015

Tis the Season

I apologize that it has been so long since my last update, but we have been very busy in the Casteel household!  It is a good thing, I suppose, that I have had little time to reflect and articulate any of our goings on or my feelings of late, but I feel it is time.  I'm not sure if any are still following, but from the beginning, this blog has been a sort of therapy for me, so I will forge ahead.  
 We have had a great year so far in 2015, albeit an insanely busy one.  I am nearing the end of my schooling, having just finished the bulk of the gateway program to my BSN, but still have 3 prerequisites to go, which I will finish in the spring.  I am still working night shift, which is exhausting, but I am enjoying it and making the most of the new opportunities for growth and building of new relationships with my "dark side" friends.  David has had a successful year thus far in the classroom, and on the field; but his reffing year has come to an early end as he needs another knee surgery which will happen in December. This was disappointing for him, but there is no avoiding it.  Hopefully it will get his knee back in good shape for the officiating seasons next year.  My big kids are good, with Asa excelling in the fourth grade.  He is being placed in the gifted program, and was voted vice president of the fourth grade.  He is starting basketball back this month and is very excited.  He has been working hard and we are very proud of him. 
 Elena is doing great in the third grade, and made the star roll (all A's) for the first time this year.  She is in ballet, and will be performing in the Nutcracker in a couple weeks which we are very excited about.  She will also be playing basketball for the first time, and is taking piano lessons from Nana as well.  I am so proud of my 2 biggest and all of their hard work. 
Jacob is doing great going 2 days to Mother's Day Out.  He loves it and is really making some strides.  He is so much fun these days, and there is never a dull moment with him around.  He has so much personality, and is hilarious; and thinks himself very grown up to be four.  He adores his siblings, and would rather be with them than anyone.  
He is still a very busy little boy and keeps me on my toes; but look out, his brother Luke is giving him a run for his money! Luke is now 2, and is the most high energy little guy I have been around.  He is a tornado of activity, and the combo of him and Jake requires my constant attention to prevent them from tearing the house apart!  They are a lot of fun though, and I am loving their close relationship.  Luke's little personality is out in full force, and he is talking so much, it is fun to watch him grow.  
All in all our little family is doing great. We are looking for direction on the home front, as we are feeling led to move (still staying in Chattanooga).  We'd like to get some land for the kids to have more space to play, so are considering school issues and the like in making the decision.  Pray we will know what to do, and that we'll be able to sell our house, and find the right place when we are ready. 

Now for a Jacob update...Many of you may have seen requests for prayer and small updates last month on facebook about him.  Here is a synopsis of what happened.  Jacob began complaining of  a headache in mid-October.  His headache persisted until he began having nausea and vomiting.  The next day his headache got worse until he was literally screaming and crying in pain.  He is a tough little guy so needless to say, I got really concerned.  I took him to the doctor who was further concerned as he didn't seem to have a virus or anything (also unlikely as he had shared his sippy cup with Luke the morning he got sick, and Luke was still fine).  Since his illness presented with a headache, his doctor felt we needed to go to the hospital for a CT to make sure there wasn't something we were missing, especially in light of his condition and its potential.  On the way to the ER, I called our team at Boston Children's Hospital, hoping that they would tell me we really did not need to worry about that.  They did not, though.  They said that we couldn't discount his condition as a possible source of the problem, but really needed a MRI rather than a CT to ensure we would see any potential vascular issues.  They also said that since we were putting him under, we needed to MRI his chest and spine as well, to see that lesion, as growth into the spine could cause a blockage of Cerebrospinal Fluid flow, which would give him a severe headache as well as nausea and vomiting.  So we moved forward.  I will say, that it was our first ER visit since his diagnosis, and it was my first experience having to explain his condition to every physician and nurse (as none had heard of it understandably).  They tried to prepare us for this in Boston, but it is still such an uncomfortable feeling being the authority on his condition in the hospital, and telling them what tests to order, and reviewing the results as well.  I have never been more thankful for my medical background which enables me to communicate on their level, but it would still be nice to simply be the parent and let the doctors do their thing.  They were great in asking questions and learning about this condition they had never heard of, and allowing, no encouraging me to make the treatment decisions.  It was scary though, and never was the burden of responsibility for his care heavier.  
He underwent a MRI of the head, chest, and thoracic spine, which takes much longer than normal, due to the large area being scanned.  He was under for about 4 hours after which we went back to the ER to wait for results.  He did great with the anesthesia, despite the usual difficulty in watching him wake up.  Once the disorientation and anger wore off, he actually felt better than before, with some of his symptoms easing.  We settled in for the wait for results.  The MRI of his head came back with a blow- he has a vascular lesion in his brain, specifically between the cerebellum (brain stem) and the larger portion (grey/white matter) of his brain.  The Chattanooga radiologist or the physician team did not know what to make of it, other than relief to know it wasn't bleeding and didn't seem to be causing any issues right now.  We would refer to our Boston team for further interpretation.  The MRI of his chest and t-spine came back with no read from the radiologist.  We were ready to go, so they allowed me to look at it, as the ER physicians again did not know what to make of it.  Having pored over all of his scans both alone and with the Boston team, I felt comfortable looking at it and making a decision about whether we could go home.  I was thrilled with what I saw.  No lesion showed in his chest that I could see, just some ragged tissue which I presumed to be treatment scarring or the like. The vascular lesions "light up"  with contrast, so I was very confident about seeing none.  There was a good deal on his back, (which we were not surprised as we can feel it), but none near the spine, so I said we're ready to go and will follow up with Boston.  We took our scans and left, and Jacob got better in the following couple of days.

I stayed in constant contact with Boston in the weeks to follow, as they received and reviewed the MRI's.  The process took longer than normal as they brought in a Neuro-Interventional Radiologist (who we have never had to see before), to consult on the findings in his brain.  The news was good as I expected on the chest/back scans.  NO regrowth or rerouting of lesion in the chest at all!  Residual scarring from our treatments in 2014 as to be expected, but absolutely no visible lesion.  This was awesome news, as the lesion is completely involuted after our aggressive treatments.  They said it will likely regrow in the future as such is the nature of his condition, but we potentially could have bought ourselves years of respite from this lesion.  They said they could not have hoped for so successful of results from the treatments, especially considering the large size and difficult location of this lesion.   They did see new growth of the lesion on his back and even new lesion on the other side of his back, but it is still clear of the spine.  They asked if it hurt him or bothered him, or was disfiguring, all of which I answered, no.  I elected not to have this treated right now since it is not hurting him, and they said to let them know if it did and we could arrange treatment.  We are thrilled at the prospect of him not needing treatment for the foreseeable near future, though we know that that could change at any time.  We'll take what we can get though, so this was great news. 

As far as the lesion in his brain goes, it is a bad news-good news-bad news situation.  The bad news (in addition to there being a brain lesion at all), is that the lesion is large, 3.5cm X 1cm X 1cm.  That is pretty big, especially when you consider it is in the brain of a 4 year old.  The good news is that they have never had to treat a brain lesion in a BRBNS patient before.  The other bad news is that that really doesn't mean anything considering there are only a handful of the 150 or so patients with BRBNS, that have brain lesions.  So the sample size is too small to say with any statistical probability that Jacob's will not be a problem or need to be treated.  When you are talking about a handful of people in the world, anything is possible.  They are hopeful that his will follow the trend and never cause problems or need treatment, but cannot tell us that for sure.  It is too large to assume it will be fine, so they want to look at it again in a year to determine a baseline.  Is it growing, changing, etc.  So basically, it is there; we have no idea if it will be a problem, and like everything else, there will likely be no warning or predicting if or when it will be.  It is one more thing (and a huge thing at that) looming over us, that we have to worry about.  One more potential for harm to our Jake.  We desperately ask that you keep Jacob in your prayers that this will never be an issue.  
I read my last post this morning prior to writing this, and really needed to hear it.  My words about not living in fear, or allowing this condition to cloud our days, have never been more relevant than now.  11 months ago when I wrote that post, I had no idea that the ante would be upped even more.  But it has.  The consequences of issues from this brain lesion could have catastrophic effects on our Jake.  But just like the others, we are choosing to hope and believe that he will stay well.  We are praying daily for Today's Miracle, and are ever thankful for it.  Please pray not only for his health, but for peace for our hearts.  We aren't waiting for something bad to happen.  We are just living.  BRBNS is not winning in our home.  We are.
Happy Holidays to all of you from the Casteel's!