I Will Give Thanks

It's Thanksgiving.  I am thankful, really I am.  That's what we are supposed to be, right?  I know I should be, I have a wonderful family, and 4 beautiful children, and an amazing husband.  I know there are families in our own community that have had to bury their children this week in such tragic circumstances.  All 4 of mine are happily asleep under my roof tonight.  But thankfulness hasn't been easy to come by the past couple of weeks, and at times if I am honest, I am kind of just talking myself into being thankful.  But that counts, right?

Many of you know that we had a MRI on Jacob a few weeks ago.  The results of that were not exactly what we were hoping.  The lesions in his chest and back were described as "innumerable," as in too many to count.  They also have grown significantly and are invading his spine, a direct danger to his health and safety.  They have invaded and crowded so much that his spine no longer appears to be straight.  This growth demands treatment, which our physicians in Boston stressed to us.  However discouraging, this was not totally unexpected news.  His last treatments bought us 2 years of good health, and no problems, for which I am thankful.  It is discouraging though to be right back here, even we knew eventually we would be.

What we did not expect, however, were issues with the lesion in his brain.  I've completely dismissed any possibility of any issue with this lesion from the day we found it, for obvious reasons.  Yes, I am a medical professional, and consider myself a realist, and don't generally indulge in denial; but the possibilities of what could happen with this lesion were too terrifying for me to contemplate, much less accept. Our Boston team was concerned about the size of the brain lesion and had their Neuroradiologist review his MRI.  He agreed that the size was significant, as well as its location deep in the center of his brain; and we really needed to get a better look at this lesion to see what it is we are dealing with, and assess the threat it could pose to Jacob's future.   When we go up there to treat his back and chest, they will also be doing a cerebral angiogram to map this lesion, and see what, if anything, can or needs to be done about it. Friends, I know what that means, and I am terrified.

I have prepared myself for the past 2 years for his condition to rear its head again.  Never an "if", always a "when."  I've told myself I was ready for this, am stronger now, more informed, more prepared, (even less post-partum), and that I was ready to deal with this head on and not fall apart.  But now it's here and happening, and I can't find my way.  I feel so unsteady, and find myself clinging to this child as if by doing so, I can protect him, or maybe just keep myself upright.  I am trying to keep from drowning under the weight of it, as I did before, but somehow feel like I'm failing to.  In arrogance, I rage inside, how this is not supposed to be happening to my child.  The anger, the grief, the fear, are so heavy.  I have fallen into darkness before, and fear that place again.  Still I feel myself slipping, unable to find a grip on anything.

But I will be thankful.  Because today I got a card from a 14 year old Freshman who heard less than 5 minutes about my son and what is going on from my dad in class.  That kid that I have never met, made a bag, with a cape, superhero masks, coloring books, crayons, snacks, and comic books from his own collection, and wrote a card to my son, and to me.  He sent these things to a child he doesn't know to help encourage him in his fight.  And this 14 year old kid that I have never met, sent this card, with an message of encouragement, to "Jake's Mom."

How did he know?  I looked at this card, and the words burned right off the page.  I instantly began to cry as they mirrored my heart in a way that this 14 year old kid could not possibly know.  I know that grace and hope are given in the darkest places, amidst fear, guilt, anger, grief, and everywhere in between.

I won't just give thanks today, I truly am thankful.

Tonight

It's hard being back in this place.  I've felt it creeping back.  Looming in the background.  Rolling in like a dark cloud, or really more like the smoke that currently envelops our valley home.  It's not that I'm not thankful, because I truly am.  Thankful for the 2 years of good health that Jacob has had.  2 years of not having to daily face difficulties with his condition.  2 years free of pain.  Tomorrow we will find out if we can continue with our lives, as if his condition does not haunt us.  Or if we will be forced to face it again, and fight it head on.  I know it is an eventuality, so the question is simply, is now the time?

I always try to balance the burden of responsibility for pursuing needed medical intervention, with the desire to let him be well when he is well.  I'm hoping this MRI will answer the question for me.  If it is time to treat, it will show us.  I'm not sure what to hope for, honestly.  Of course I hope things aren't as bad as I fear, and would love to spare him treatment right now.  But that means continuing to wait for the pain to come, signifying the need for urgent treatment, which is a scary proposition, and (with our treatment being 1,000 miles away) a logistical nightmare.  On the other hand, if there has been enough growth to indicate the need for treatment, since he is still doing well, that gives us time to plan and schedule and make arrangements for travel to Boston.  It means treatment in a controlled, proactive situation, rather than an emergent one. So I'm not really sure what I'm praying for.

I feel a bit more prepared now, but in some ways less so.  He's older now.  At 3, he just rolled with whatever, and we really didn't have to explain in depth the bigger picture.  Now he's 5, and it somehow feels insufficient only telling him what will be done to him.  I feel that we should be telling him more, but where to begin?  His condition is so complex, simplification seems impossible.  How do I help my 5 year old understand when its hard for most people I know to comprehend.  So for now, I suppose I will keep with the who, what, where answers;  and I will wait for his mind to form his own questions.  Let him lead the conversation.  I don't know whether that's the right decision or not, but it's the one that feels right and that I have peace with. 

Tomorrow I will help my son play games with a mask.  Breathe into it like a diver, with strangers looking on.  Once asleep, I will hand him over to these strangers and entrust him to their safekeeping. I will wait, for hours, as they take pictures of the mystery inside his chest.  

Tonight I look at the moon.  Those of you who know me well, and who know Jake well, know how special the moon is to him, and thus to me.  I'm thankful for the gift of it tonight.  We kept him up late (since he cannot eat in the morning), and for a while, he and I sat on the porch and looked at it.  Wrapped in a blanket, we sat together; and I listened to him talk about his new bear, George, bouncy houses, his teacher and friends at school, how big the trees were I saw in California, the letter Y, and the moon.  Those of you who live here know that our area has been devastated by wildfires that have been burning on the mountains that surround our city.  It has spread all the way to downtown, and has left the whole city covered in a smoky, fog-like haze.  We haven't had enough visibility to see much of anything for weeks, but tonight, we saw the moon clear as ever.

It shines for you tonight, my Jacob.  And brings your mama hope for tomorrow.  

Watching and Waiting...

Disclaimer:  I wrote this post a month ago, but just now getting around to publishing. Some things might be slightly dated.

Sorry it has been awhile...thankfully we have had an uneventful length of time since I last updated.  Know that it is really a good thing if I am not writing much, as this blog is a bit of an emotional outlet for me.  Nothing to write-all is well.

Spring came and went with lightning speed.  Elena enjoyed the end of her dance season with a spring recital.  She even was front and center in one of the numbers which was very exciting for her in her first year of dance.

She also worked the concession stand this summer at my dad's basketball camp, something I did for many years, which was quite a full circle moment for me.  I am very proud of how hard she worked and she had a great time living in the gym for 2 weeks. She also went to church camp for the first time.  She did have one her closest friends with her, but it was hard for her to go away from home.  She did so great though, and had a great week.

The 2 oldest boys played baseball, and that was fun to watch.  It was Asa's first time playing since he was 6, but he really wanted to play again.  He surprised me with this decision, but we fully supported him and were so proud to see how hard he worked to get back in the game.  He improved so much and had a great season.

He played basketball at my dad's camp this year for the first time, which again was a point of nostalgia for me.  Basketball camp was the highlight of my summer for so many years and I am so thankful he gets to enjoy it as well.  He was one of the youngest kids but worked hard and improved a lot.  He also went to church camp, and I was so proud of him.  None of his friends could go, but he went anyways and made many new friends and had a blast.

It was Jacob's first year on the field.  At 4, he was the youngest one out there, but he really wanted to play.  He was so cute, and it was a fun season.   

watching big brother

Jacob spent much of his baseball season like most 4 year olds would-playing in the dirt.  He enjoyed it though (until he got hungry and/or hot), and it was so much fun watching him and David out there together as David coached his team.  Our little guy turned into a pretty good hitter, and loved running the bases.  Jacob was very happy when the season was over, because he got his first trophy.  It was a great first year of ball for him, and we loved watching him have fun.

Luke is now 3 and declares himself a big boy, except for during nap time when he still wants a binky.  He potty trained literally in 1 day, we simply had to wait for it to be his idea.  We should have known better than to think we could talk him into it...he is ever his own little person.  It is very nice though finally having NO KIDS IN DIAPERS!!!  Big development for our family.  Luke is so much fun though, each day deciding which animal he will pretend to be that day.   He is, however, the truest definition of a boy:  a noise with dirt on it.

We have had a great summer with the kids-enjoyed our first beach vacation in a couple of years.  It had been too long, as life had simply gotten in the way.  But it was so nice to get away with our family and enjoy a week at the beach.

In August everyone went back to school.  Jacob and Luke started at a new school, which we have been very happy with.  He is in a 1/2 day kindergarten, which prepares kids to either go on to first grade, or enter regular kindergarten the next year, whichever the parents think they are ready for.  We planned to send Jacob late, as we did with Asa and will also with Luke.  With their summer birthdays, we feel its the best choice for them.  We had hoped that doing this (for him) pre-kindergarten, that it would give him a leg up for next year.  He has a small class (only 7 kids), a great curriculum and structure, and an enthusiastic and patient teacher.  It has been a perfect fit, and he has learned and grown so much.  

We have enjoyed a blissful time these past months...years, really.  It is hard to believe that it's been over 2 years since our Boston trips.  Seems like the other day, but a lifetime ago.  Things are starting to happen with Jacob, which has me on edge.  I know I should be thankful that the treatments bought him 2 years of good health, and I really am.  We had 2 years of Today's Miracle. It's just hard going back to this place.  Not that we ever forgot about his condition, as it is never far from my awareness, but it didn't factor in to our daily lives.  But I know that BRBNS will always come back around, and the reality of that is settling back in.

In July, Jacob had sudden onset of pain in his ankle, the one I have worried about since the beginning.  The blue spot there (which many tried telling me was his saphenous vein, not realizing how well I know a saphenous vein when I see one), overnight was hard as a rock, and much larger than ever before.  We were out of town at the time, and as this was a superficial lesion, I didn't feel emergent treatment was called for.  A call to our physician team in Boston confirmed this, stating that he likely had thrown a micro clot in this lesion, and it would likely resolve itself soon.  They could look at it via ultrasound and treat if necessary next time he was up there for treatment.  They were correct, as in 2-3 days, it was back to its original size, softer, and not painful anymore.  This little blip caused me concern though, as it demonstrated things happening with his condition, which we do not want to see.  In addition, we have noticed growth of the lesion extending out of his chest and onto his back again.  This is the biggest area of concern.  We have no idea what the lesion is doing inside of his chest, but growth outside likely correlates with internal growth.  Boston felt we were still immediately ok as he is having no pain, but likely moving towards needing treatment again to shrink this lesion.  They want us to include imaging of his T-spine (the most dangerous area for growth to  occur) when we MRI his brain this fall.  If you recall, last October he had neuro symptoms that prompted us to get an MRI of his head.  It revealed a lesion in his brain.  We were to re-look at that 1 year later to try to establish a baseline.  After talking to our physician team in Boston, we have scheduled an MRI of Jacob's brain and T-spine for November 15 here in Chattanooga.  We will then send the imaging to Boston for their review and get their recommendation.

Perhaps the new imaging will show continued stability of the lesions, but I am feeling skeptical.  That's maybe the wrong word-I am feeling resigned.  I feel like we will be heading north with our boy this year, but I am thankful for the 2 years of good health he has had, and I hope that whatever treatments are necessary will buy him more years of good health.

On an unrelated note, there is another issue with Jacob that has raised concern.  We often noticed over the past years that Jacob often does not hear what we say, but always felt that he didn't listen.  He is often in his own little Jacob world, and tunes out everything else.  We chalked it up to that.  However, his pre-K teacher this year pulled me aside a couple weeks ago and mentioned that she did not think that Jacob could hear very well.  She acknowledged that he could just not be listening, but said that he would often reply "Huh?" to things she said when he was paying attention.  She recommended getting his hearing checked.  He happened to have a regular checkup scheduled with his pediatrician that next week so I brought it up.  He did a hearing screen on Jacob in the office, and Jacob failed both ears.  He was then referred to an audiologist for further testing.  His hearing checked out well with audiology, and he passed all three much more detailed tests run at the hospital.  After working with him, however, the audiologist suspects a potential auditory processing disorder.  This is where the ears receive the stimuli in a normal way, but the brain does not process it like it should.  Or the brain does not receive the message as it can only process one message at a time (such as visual stimuli, or tactile stimuli).  He is as of yet too young to definitively diagnose with this, as it could be related to his maturity level, but the audiologists strongly suspects that time will show that this is the issue.  We do not think it is related to his BRBNS, but it is common with children who have had lots of anesthesia at a young age.  e been a bit frustrated about it, as I feel like he has enough to deal with and now we have this to add on top.  But I know that we need to be aware, and intervene if necessary to help him overcome any additional challenges.  I know he can hear me, but perhaps all is not as it should be.  I am thankful for his astute teacher for bringing her concerns to our attention.  He will continue to be followed by audiology to assess his progression, and implement therapy as needed.

Please pray for us as we watch and wait on all of this.  I've said before, I hate feeling like I'm waiting for something bad to happen; I want us to just live our lives out from under the shadow of his condition.  But sometimes that shadow casts farther over me than I'd like to allow.  Pray for all of our kids, as their awareness of anxiety on our part increases as they grow older.  May we have the words and actions to convey peace to their hearts.  Pray for Jacob.  That he stays well, free of pain, and that the beautiful soul he has stays full of joy and little boy mischief.  That he continues to have "today's miracle."