Ducks, Baseballs, and Good News

Greetings from Boston!

We made it up here on Sunday afternoon, and are finding our way again at our home away from home.  We spent the remainder of Sunday getting settled in, and getting some groceries.  This is the first time we have stayed at the Devon Nicole House, one of the smaller patient and family housing sites for Boston Children's.  While we love the Yawkey Inn, we are finding the DNH very comfortable, and actually a bit closer to the hospital, so very convenient.

We had a last minute change of one of our appointments, which was moved from Monday to Tuesday.  So we found ourselves with the whole day Monday to do whatever we wanted.  Jacob wanted to go to the science museum, which is his favorite.  The hospital also gave us tickets for a duck tour, one of the land and water vehicle tours.  We did this first, and had a great time.  It's a fun way to see the city, and Jacob was very excited as he even got to drive the boat a bit!

After the duck tour, we went into the Science Museum, which is one of Jacob's favorite places in the city. 

 They had a new exhibit, a mirror maze, which Jacob loved.  It was really cool, and he found his way through it twice.  He was laughing the whole time, because there were "so many Jacob's." 

 

We spent the rest of the afternoon playing at the museum until it closed.  We headed back to the house, exhausted, and ready for an early night, since we had a full day of appointments scheduled for Tuesday.

The first one was at 9am, with a new orthopedic physician, who specializes in the spine.  After getting a new round of x-rays, we met with him.  He was actually fairly pleased with Jacob's spine, being at only a 16 degree curve (albeit also with rotation), vs. the 14 degree curve he had last March.  So it is relatively stable.  He also felt that in regards to the lesion's relation to Jacob's spinal cord, that there was still room between the two, that should allow sufficient space for the spinal cord, and that it is not currently being compressed by the lesions.  He did see an area of questionable invasion of the lesion into the spinal canal, which he said if they see that today during fluoro, then he will want us to proceed with an MRI to further evaluate.  He was pleased with Jacob's exam, that Jake showed no weakness in his legs or feet, and had good sensation and reflexes as well.  This supported his opinion that his spine is still, though curved and rotated, fully protecting his spinal cord.  He reiterated that decisions on surgical excision of the lesion, will need to be made based on Jacob's symptoms, which we all agree that currently do not warrant such a drastic move.  So bottom line, though we are not, and likely will not ever be out of the woods in regards to Jacob's spine, we get a pass for today!  As much as I would love reassurances of being able to cross this worry off the list, I will take what I can get.  With this wildly unpredictable condition, we will keep hoping and praying for "Today's Miracle"  and are thankful to have gotten it today.

We spent the next few hours in the pre-op clinic, and David even took a "break" and went and gave platelets (which they announced overhead that they are in dire need of) here at the blood donor center.  I'm also thankful for my brother Mitch, for stopping by our local Blood Assurance in Chattanooga, and giving yesterday in honor of Jake.

We got out of preop early, and grabbed a bite to eat, and found they could see us early for our last appointment, with our Interventional Radiologist, who is our main treating doctor here.  He is amazing and has done all of the Sclero procedures on Jacob here in Boston.  I was very anxious about this appointment, as they had prepared us for the possibility that he would have to cancel the procedure, if there was too much scar tissue, and not enough open channels of lesion to treat.  This would have put the surgical option quickly back on the table.

He ultrasounded Jacob himself, and though he could see extensive areas of scarring, he did see open areas that he can treat, so we were a GO for the procedure Wednesday.  He also incidently saw a spot on Jacob's spine x-ray, and from our reports of Jacob's intermittent leg pain, ultrasounded his leg and found a new cluster of lesions in his right thigh.  The spot that was visible on the x-ray was actually a calcified blood clot, likely causing a lot of the pain.  He is going to sclero this area as well today.

After our appointments, we went back and took a nap, and then got a call from our friends at the hospital that they had Red Sox/Yankees tickets that had been donated that they wanted to give us.  We were so excited!  We headed to Fenway, and found we had great seats, just up the 3rd base line.  It was a little chilly, but hot chocolate kept us going, and it was a fun game.  We explored the stadium a bit, even went on the Green Monster.  The Sox played great, even had a 9 run inning with a grand slam, so it was very exiting.  Best of all, right before we were about to leave, David caught a foul ball for Jacob!  They both were so excited, and it was really fun, all the fans around us cheering for and high fiving Jake.  It was a great experience that I think we will all always remember.

So now, we are in the waiting area, as Jacob went in a little after 8am this morning.  Overall, we are happy about how things are going so far, but will not take a breath until Jacob is out of surgery today, and hopefully, we get a good report.  Thank you to all who are praying for him and for us.  I'm not feeling too articulate right now, as my mind is very scattered with Jacob under, but hope this quick update makes sense, as at least it provided a distraction for me.  I will update again as I am able to.  Again, thank you all for your prayers and support.

Believe

We are exactly 1 week away from heading back to Boston with Jacob.  I am sorry that I am not good about updating until we have an impending trip, but such is the nature of life.  We are too busy in between time for me to think about posting regular updates, and to be honest, writing here brings his condition to mind.  For the most part, though it is never far from my mind, ever; I have learned to embrace denial as a reasonable coping mechanism.  Not really even denial, as I do not dispute his diagnosis and accept it fully; but I guess avoidance is a better word...I just try not to bring it to mind on a daily basis.  There is so much unknown about his condition (none of it being good), that plagues me to think about, as I have written about before.  I wish I was able to think about it and not be consumed with fear and worry, but honestly, by account of not thus far being able to successfully battle my nature in that respect, I choose to try not to think about it instead.  My success on not thinking about it lately though has been minimal.  So many thoughts the past few months, so many little things nagging in my mind.  This also terrifies me, as it gets further in my head, making me wonder if it is my intuition trying to tell me something, or merely unfounded worry.

Going back, we sent imaging up in December, 6 weeks post-procedure, to see how the lesion responded to the treatment done in October.  Our physician team was discouraged at this imaging, as although his spine looked marginally straighter, the lesion itself was a mess.  Tons of scar tissue so that they could hardly tell what was going on in it.  They reinterated what they had warned us about on the previous visit, that they fear we are reaching the point (if not there already) where the lesion is too scarred to respond to sclerotherapy anymore.  This often happens with these large lesions, after which the patient has to really just live with the pain, there being no other good options for treatment.   They emphasized though, that due to the location of Jacob's lesion, and the proximity to and resulting damage to his spine, that that was not an option for him.  They know that to not continue to agressively treat his lesion, and keep it (relatively) small, that the continuing damage to his spine would likely result in paralysis.  Thus they are gravely concerned about the prospect of his lesion not responding and shrinking after sclero.  Because of that, in order to best gauge the current condition of his spine, and to evaluate additional treatment options, they made us an appointment with a spine orthopedic specialist.  If he feels uncomfortable with the condition of Jacob's spine, and his lesions' response to surgery, then they want us to move forward with discussing the next option: surgical resection.  Now surgical resection is not something that is routinely done on patients with Jacob's condition because it has proven largely unsuccessful.  I mean that even if a large lesion is removed sucessfully, remember this condition is like a genetically inborn error telling his body to make these lesions.  Thus, after surgical removal, usually the lesions grow right back.  Any result is temporary.  In addition, surgery is very risky, as the lesions are vascular, and thus prone to bleeding when attempting to remove.  Jacob's would be riskier than most, with his lesion being so large, actually described to us as "hundreds" of small lesions all enmeshed together, and tangled up in his chest with his vital organs.  His extends from his back through 4 ribs, entering his thoracic cavity, invading the pleura (lining of his lung) on the right side, then wrapping between his heart and spine, to go through 2 or 3 ribs on the other side back onto his back on the other side.  So we're talking a very invasive lesion, that would be very dangerous if not impossible to remove.  In addition, bleeding or manipulation could result in paralysis during surgery as well.  So this is really not a good option either.  I told them over the phone that they would have to convince me that they felt strongly that something imminently catastrophic was about to happen for me to consent to something that could have an equally catastrophic result.  They understood, and said they don't know that we are there yet, but wanted to prepare us for the possibility.  Bottom line, is that they did not expect for neither his lesion nor his spine to be in the shape they are in with him being only 6 years old, which makes them very worried about his prognosis with all of the growing that he (and concurrently his lesion) still have to do.  So that is the long and short of it.

I am trying to not get too carried away with this prospect, and hope that once we get up there, that it will not look as bad as they are expecting.  Honestly, they even told us that we may get up there and them look at it and say that they cannot even do a sclero this time, due to scarring.  They made an appointment the day before the procedure for his doctor to ultrasound him himself and make the final decision.  But I am just hoping that they can treat it one more time.  And after that, I will hope for "one more time" again, and then "one more time" after that, and so on.  I hope we are never faced with the prospect of surgical resection as the only option.  I am very discouraged and scared that we are even discussing it right now, but am remaining hopeful that we aren't there yet.  I am also terrified that we will be asked to make this impossible decision that I cannot for the life of me imagine making.

I love this child (as I do all of mine), more than my own life.  And would do anything to keep him healthy and give him the best possible life.  I look at him, and watch him playing, and my breath catches in my chest.  It is inconceivable that he have anything less than the beautiful freedom of childhood that he has now, and the strong little body to explore the world in which he lives.  I hug him so tight, breathing in his smell of grass and dirt, and that mysterious little boy smell that I cannot place but know it with my eyes closed.  I run my hands through his beautiful blond mop of hair, and don't want to think about what is growing inside him, threatening his safety.  His eyelashes that are impossibly long, and that lone dimple on one cheek, and that adorable lisp, that I cannot seem to remember to schedule speech therapy for (sorry speech friends, I know I should...),  and every little expression and nuance that makes this child who he is, both delights and terrifies me as I do not want to imagine anything that could dim the brightness of my son or steal his joy.  I have said it before, that he is my hope and fear all wrapped up in one little boy I would go anywhere or do anything to protect.  But I know I cannot.  At the end of the day, I believe his life is bigger than me or any decision that I could make, and his safety lies in the hands of the One who created him.  It is just hard for me to remember that, and I tell myself that a thousand times, but let myself believe it a fraction of those times.  I know I should, and that it is arrogant not to, it's just hard to let go.

Belief is a funny thing.  I think there is a distinction there, one between "knowing" and "believing."  There are many things I know.  Knowing implies a knowledge, housed in your brain, that impacts what you do.  Belief, I feel is in your soul.  It is a security of something that you know to an extent that it impacts how you feel in your heart, permeates the core of your being...who you are.  I "know" in my head that my son's health is out of my control, as are so many things in life.  I don't think though, that I have ever crossed into the state of "believing" that.   I believe that the choices we make do impact his chances of a healthy life, and will as such continue to fight for him to get the best care.  But I know that simultaneously I cannot do enough and fight enough to ensure a healthy life for him.  I just struggle to allow myself believe that and thus carry a burden of responsibility that I know is unfair and misplaced.  I've spoken before of my personality and also what is ingrained in me as a nurse, both of which make me battle that; but I say it not as an excuse, because I know I would worry less if I could simply let go and believe.  The fears pile up and weigh me down at times, casting a shadow so big that it covers my whole life and everyone in it, I'm afraid.  I don't want to lose heart.  I don't want my fear to be bigger than my hope.  I wrote a post titled "On Fear" a while ago, and have made myself read it a few times lately.  I so want to believe.

The children's hospital where I work, is building a whole new hospital.  An entire new children's hospital multi-building facility.  This is a multi-stage, gigantic building campaign, aptly named the Believe Campaign.

It has been planned for and talked about for many years.  I remember hearing about it in the early stages, years ago and thinking, "yeah that'll never happen" or "I'll believe it when I see it," or even "IF we ever get a new hospital..."   Now every day as I drive in, I see phase one being constructed before my eyes, looking closer to completion every week.  I see money being raised, goals being met, and more plans becoming reality.  I had a moment the other day, I didn't think about it, but it just came out of my mouth "...when the new hospital is done and we have our new unit..."  Not "if", but "when."  I'm not sure when it happened.  When I moved from doubting to knowing to believing.  But somehow, someway, I did.  Without even realizing it.  I want to believe like that, about Jake.  That he can stay healthy.  While I still do, and forever will reach for and be grateful for Today's Miracle  that I have written about so many times, that Jacob simply be healthy today;  I want more.  I want to believe in a miracle for tomorrow as well.  And the day after that, and the day after that.

Jacob is a big lover of music.  One of his favorite songs lately, is from the Trolls movie.  It is a beautiful, stripped down version of "True Colors" performed by Justin Timberlake and Anna Kendrick.  I have been trying to commit it to memory, so I can sing it to Jake on the upcoming trip.  One of the lines keeps sticking in my throat...it says "the darkness inside you makes you feel so small."

I feel that darkness inside me these days...that fear that casts a shadow over me that could reach everyone I love.  I don't want that.  I want belief to come from my soul and cast light over my fear, and also over everyone in my life.  I pray one day I will.  For today, as I'm feeling weak, I will be thankful for those in my life who cast light in my darkness.  Those who love my son, and my family.  Those who know me, and my failings, and somehow still love me and turn light my way.  Those who believe when I'm not strong enough to.  You all know who you are.  I love you.

Pray for my Jacob.  Pray for us as we travel, for the doctors as they examine him and help us navigate what's best for him.  Pray for their hands when they touch him, to be used for healing. Pray for my babies left behind, and our family as they love and care for them.  Pray for me. Pray for hope for my heart.  Pray for me to believe.

Disclaimer:  The image of the "Believe Campaign" is the property of the Erlanger Health System and all comments made here are my own thoughts, and are not necessarily reflective of the views of the Erlanger Health System.