Boston trip #10

Of note: I did backdate this post, so they would stay in order, but it was actually written in late summer 2021.  But the timing of these events were July 2020.  

I realized when I got on here to write the other day, that I was way behind in updating on Jacob.  I like to keep this updated as it's also my running record of his medical treatment, etc.  Our last trip was in December 2019, coincidentally right before the world went off the rails so to speak.  2020-2021 has been a challenge for us, as well as for the rest of the world, and writing took a back seat.  I likely won't share these "catch up posts", as they are simply for my own record, and a year and a half later, not a whole lot of feelings on them to share, but we'll hit the high points.   

We had planned after that December 2019 trip, to try to go longer than 6 months between treatments.  This was the most stable he had been between procedures, and his medical team felt this was the time to try to space out a bit.  Most kids hit a plateau of sorts on lesion growth in later childhood, before the rampant growth of lesions during puberty.  Jacob had still not shown any stability of growth until now, so we all were hoping we had finally hit that phase of relative dormancy.  So we were tentatively planning for a trip 9-12 months away, so fall 2020 or winter 2020.  However, these plans were halted in July when Jacob had a rapid onset of symptoms showing lesion growth in his legs and back.  The lesion in his left knee grew so much and was causing so much pain, he was limping and could no longer ride his bike or run.  This of course was concern, but greater concern for his chest/spine lesions, as growth in one tends to reflect growth in another.  So after contacting his medical team in Boston, the decision was made for an emergency trip for treatment.  We have always known this was a eventual probability, but the reality was very stressful.  We had 10 days until his procedure, to work out details of travel and accommodation, and during a global pandemic to boot.  They also wanted a full body MRI prior to his procedure, which had never been done at our local hospital, and also needed insurance approval.  The reason behind this, was they wanted to make sure and treat all the lesions while they were in there, so he wouldn't have a flare up of an untreated lesion soon after we returned home.  This took a great deal of maneuvering to get our local hospital to agree to do, and also involved them programming their machine with the 86 page protocol, move the entire weeks MRI schedule to get a 6 hour window in which this could be done, and secure an anesthesia team as well.  Not to mention the insurance approval.  I was so proud of our local hospital as they literally moved mountains to get this done for us, and I was so thankful.  As far as insurance goes, we were sitting in the MRI waiting prior to his procedure, still with no approval, and this mama had to get rather...adamant on the phone with our insurance to finally secure the approval.  It was quite a stressful day, but we got it done.  He was amazing, waiting patiently until after 1pm without eating, and recovered like a champ.  

It took 7 hours, in fact, and Jacob was under general anesthesia for the entirety of this procedure, so it was a long day for us all.  Unfortunately, the results were not good.  We were unable to change the plan of care, and treat all of his lesions.  The MRI literally lit up like a Christmas Tree.  The radiologist used the words "innumerable" 4 times in the report to describe the number of lesions present throughout his body.  In light of this, our Boston team said it is not possible to treat all of the lesions, so we will have to continue just treating what is symptomatic.  This was discouraging, but not necessarily surprising.  He has constantly had new ones pop up, go quiet, then flare up again.  This condition is just so unpredictable, and so difficult to treat as there is no actual cure, or potential for permanent removal of these lesions.  But we knew this, so will continue on as before. 

We headed up for his procedure, and it was much different than every trip before.  This was July 2020, and Boston had been hit hard and fast in the pandemic by Covid-19, and it was clear that the people of Boston wanted no further part of this virus.  It was much different from the South, where everyone was still bickering over social distancing and wearing masks.  We went to Boston and literally EVERYONE was masked.  And the city was so different, it was a ghost town.  Many of the places we normally like to visit were closed, and some that were open we chose to avoid due to potential spread of germs.  So we mostly kept to ourselves, and the outdoor spots we were comfortable with.  It was sad, as it was supposed to be Luke's turn to go, and due to restrictions on sibling visitation, he was unable to go.  So it was just me, David, and Jacob.  We did all of the usual pre-procedural visits, with the addition of a Covid test.

And we still had time before to go visit our favorite place in the city, the Boston Commons and Public Garden.  It was different than usual, with far less people, and the swan boats weren't running, which is unusual for this time of year, but we had a great time.  Jacob was excited to find a "Boston Strong" sign at the ballfield, which he loves, remembering the BOSTON STRONG t-shirt he got on our first trip.  

Procedure day went great.  Jacob is so brave and an actual pro at this by now.  They are still amazing and go to great lengths to make sure he is not scared, and making him comfortable.  Normally he tends to like to clown around in pre-op, but this time was different.  The early morning got to him, and he fell asleep.  I was pleased he was relaxed enough to do so. 

He did let anesthesia know he still wants to be a diver, so is an expert at breathing into the mask, and when we entered the IR suite, they had the underwater scene ready on the big TV.  

He again recovered well, so much so that we were able to leave that day.  He had some pain, but we were able to keep it under control.  His doctor was fairly pleased with things all in all, his back and chest was again, "moderately stable."  Not no growth, but only a moderate amount which is good for him.  They also treated both of his knees, the one that had been hurting him so much was a mess.  The lesion had actually ruptured, leaving a large clot in and around the joint.  As a result, there wasn't much they could do for that one, the blood will slowly dissolve on its own, but the lesion was already shrunk back down since its rupture.  So we left pleased with the report, and as usual we left the hospital and slept through the evening. 

He again recovered well, so much so that we were able to leave that day.  He had some pain, but we were able to keep it under control.  His doctor was fairly pleased with things all in all, his back and chest was again, "moderately stable."  Not no growth, but only a moderate amount which is good for him.  They also treated both of his knees, the one that had been hurting him so much was a mess.  The lesion had actually ruptured, leaving a large clot in and around the joint.  As a result, there wasn't much they could do for that one, the blood will slowly dissolve on its own, but the lesion was already shrunk back down since its rupture.  So we left pleased with the report, and as usual we left the hospital and slept through the evening.  The next day he wanted to get out, but we didn't want to go too crazy.  We went to the North End and saw some places he likes, and got some good food and gelato.  Kept it low key, and came back fairly quick before we overdid it.  

We had one last day before we left, and Jacob was doing great.  We wanted to continue to keep our distance, and not expose him to the virus, so we decided to do something we had never done before.  We rented a car and drove to Cape Cod.  In all of our Boston trips, we had never done that, and figured we'd be able to keep to ourselves, and keep our distance from everyone.  It was close to a 2 hour drive, but he did great.  The first beach we stopped at was on the Atlantic side of the Cape, was very beautiful, but very rocky and COLD.  He lasted about 20 minutes before telling us he was tired and ready to go.  

We quickly left. and drove a bit and saw some lighthouses. He fell asleep fast, so we decided just to drive and see what we could so he could sleep as long as he needed.  We drove all the way to the tip of the Cape and made our way back.  When he woke up, we stopped at a local restaurant and got some good seafood.  David was excited about the lobster, of course.  Afterwards, we stopped at another beach, this time on the bay side.  The water was much warmer, the waves calmer, and the sand softer.  This was more his speed. We still only stayed 45 minutes or so, but had a good time.  He didn't spend much time in the water, but mostly on the beach looking for shells and small sea creatures.  He knows how he feels and what he is up to, and I'm thankful to not have to hold him back to keep him safe.  

We left the next day and had an uneventful trip home.  Looking back, I do remember small things that were an encouragement to me.  There always seem to be little things along the way that are a balm to my heart, and help keep my mind hopeful and positive.  This time was no different.  A sign in the hospital, "Where the world comes for answers," that made me thankful as always, that we have a place to go.  That answers are always found here, even with this mysterious condition.  

Most poignant of all, as we walked towards the North End, through waterfront park, someone had suspended the word "HOPE" above one of the archways.  It was hung in such a way that you really didn't notice it, except for the shadow it cast on the ground.  We had been through there many times, and I have never noticed it.  I'm not sure who hung it or when, but that day, it was for me.  I'm so thankful that little signs always seem to pop up, in and around these trips, reminding me to hope.  For as Robert Schuller says, "Let your hopes, not your hurts, shape your future."  For my son, may it be so.  

*All photos posted with Jacob's permission. 

Breath of Heaven

We just returned Sunday from our 9th trip to Boston for Jacob.  It was a good trip.  David and Jacob and I went, and we took Elena as well this time.  It was a sweet time for her and Jacob together, as it was last time when we took Asa.  I am so thankful for my kids and the love they have for each other.  His procedure was challenging as usual, but successful.  They treated the large main lesion in his chest, trying to keep it small and keep the pressure off his spine.  It is still working, as it continues to respond to treatment and shrink, though the effect is temporary and it will reroute and regrow.  But we are so thankful, that the treatments are still working.  We had a follow up appointment with the ortho specialist, who was pleased at the continued stable curvature of his spine (around 20 degrees).  They also treated the lesion in his right leg that they treated last time, that has caused him some pain, as well as a new one in his left knee that popped up just a couple weeks before the trip.  He has one in his neck that had been hurting him as well, that they were not able to treat, as it had already ruptured and there was only a blood clot remaining.  But overall, they were very pleased with how he is doing, and plan on seeing him again and treating him next fall to winter, depending on his symptoms.  He did well post-op, and we were able to be discharged that day. He recovered well over the next few days, is still having some intermittent pain, but less every day.  It was a good trip. 

 

 

I've been thinking a lot the past weeks about the past year.  Those closest to me know I have had a difficult time this fall.  I always struggle when we get close to going to Boston, but these past months have been more than that.  I have experienced depression before, and have spoken of it here.  I know this fall, that's been where I have been.  I have also spoken of the challenges I've faced this year at work.  That has played into this as well.  I have experienced more doubt, more discouragement these past 6 months than in my whole career.  I have personally been attacked and judged, regardless of my words, actions, and intentions.  In my darkness I have at one time or another doubted my hands' ability to heal, my mind's ability to teach, and my heart's ability to lead.  The depression has been crippling at times at home as well, and I am so thankful for my husband who understands and is there with me, and keeps everything running when I am incapable of doing so.  I always doubt my decisions with Jacob, and did even more so than usual in the weeks leading up, as he had more symptoms seemingly by the day.  I always feel so inadequate, and am crippled with fear of what could happen to him. 

My favorite Christmas song is "Breath of Heaven" by Amy Grant.  The past few years it has hit especially close to home.  In no way do I dare compare myself to the mother of Jesus, but I also identify with the words and feelings of this song.  So many times have I wondered if people look at my face when I'm feeling lost and wonder "if a wiser one should've had my place."  So many times I have known they should.  I see so many walk roads more difficult and heartbreaking than mine, with such grace and joy.  I struggle on with my lot, which is nothing compared to the suffering of so many.  But funny thing, there is no sliding scale on suffering, the validity of it is real to those who bear it.  I've even had friends make light of their problems in the face of mine, and I brush that off, as heartbreak is heartbreak regardless of its comparison to that of another.  But I struggle to give myself such grace and instead allow that comparison to make me doubt my ability to be Jacob's mom.  I know a wiser one should've had my place. 

More than this though, I identify with her words, begging for a "breath of heaven" to "hold me together."  I have searched so much the past few months, in my self-imposed darkness for a breath of heaven.  The beauty is that, as I am finally seeing clearer, as I look back over the past months, I see countless breaths of heaven on me and my family.  Things like a hug from a friend...a heating pad left under the covers to warm the bed for me for when I get home from work...a message of encouragement from a young nurse...texts and calls from my brother who understands firsthand how dark the darkness inside you can be.  Things like a bracelet from a friend to remind me I'm not alone no matter how far I go.  A friend walking into your messy house and just being present with you and helping you pack. Things like a team around me excitingly working hard on a project I have poured myself into, together giving a baby the best start at life.  My daughter's clear sweet voice, singing hear heart out.  The prayers of our church body, with hands laid on our son for healing.  Huge breaths of heaven, like a check in the mail from a church family not our own, but one moved to help us when our flight assistance fell through...a handwritten letter and gift from a colleague turned friend...and generosity of a stranger from simply finding their lost dog.  And breaths of heaven straight to my heart, from an anesthesiologist who heard my son wants to be a diver, and hand drew fish and bubbles on the anesthesia bag that would be used to inflate the lungs of my unconscious child.  This one who also gave him goggles to go with his "diver mask" so he wouldn't be afraid to breathe deep and go to sleep for surgery. 

For the recovery team who picked the bedspace so my son would wake up in the spot that has a diving picture on the wall next to it.  The breath of heaven in the form of seeing wiggling toes under the blanket of my still sleeping son in recovery.  So many times over the past months have I had a breath of heaven breathed into my life and heart.  Some breaths helped my family in tangible ways, and some I know simply encouraged my heart and cast light into my life. 

I don't know who all is reading this.  I've had as few as 50 people read my blog posts, and as many as several thousands.  I pray though whoever needs this one reads it.  I pray it touches a heart.  So many around us are hurting this time of year, and need their own breaths from heaven.  I pray that if you are experiencing your own season of darkness, that you will be able to see and feel the breath of heaven in your life this Christmas.  Much love to you all.
  

"Breath of heaven, light in my darkness, pour onto me your holiness, for you are holy.  Breath of heaven." 

6 month post-op update

*Disclaimer: I wrote this in May, sorry just now getting around to posting.

I know I've been delinquent in updating, as I said in the previous post, so here's how things have been the past 6 months...Soon after our Boston trip in November, the holidays were upon us.  They were extra special this year as we decided to give the kids an "experience" rather than stuff for Christmas.  They are all huge Harry Potter fans, and have been begging to go to HP world at Universal Studios.  So for Christmas they got their owls and Hogwarts letters, and we left for Universal.  It was an amazing trip that I will remember forever.

Since then, we've just been busy with the grind of school and work.  Jacob and Luke are well into baseball season right now, which started off very special as Jacob was given the "Courage Award" for persevering his health challenges to play.  The league where they play does this every year, honoring a child with this award, and has a special time during the opening ceremonies of the season to give it to them.  This was so amazing to see him honored in this way, and we are thankful to the league for recognizing him and doing this.  We have had a lot of fun this season and are thankful for his health to be able to play. 

As May rolled around, so did the 6 month mark since his procedure, meaning it was time for his imaging.  We scheduled it here at our local children's hospital, and sent the images to BCH to his doctor for review. I was very excited as our local hospital just built a new outpatient center.  There Jacob was able to get his imaging done in our new EOS system which previously he has only had at BCH.  It utilizes lower dose radiation and produces higher resolution imaging.  I was very impressed and proud at our hospital's commitment to expanding the technology we offer to give the best for the kids in our region.

As you may remember, the last trip our doctor was so pleased with how Jacob was doing, he hinted at the possibility of skipping the next treatment and allowing him to go a year between trips.  I was afraid to get my hopes up too much, but I won't lie, I had my hopes up.  Though we will go up there as often as possible to keep my boy healthy, to the point of moving up there if we have to; I'd be lying if I said I wouldn't love to go a year between trips instead of every 6 months.  So we just got the good news this past week: the lesion growth has been minimal, and appears stable, so we do get to skip this treatment cycle.  We are so excited!  So we are going to look forward to the summer ahead, and not think about BRBNS for awhile longer.  We will certainly have to go in the fall, as he does not feel comfortable going longer than a year without seeing Jacob.  We tried that before and lost a lot of ground, so we don't want to make that mistake again.  But I am thankful for this break and am going to enjoy my boy being well.  Thank you sincerely to all of you who have prayed for him, especially of late.  I know I am quiet about him until something is looming, but know that I am ever grateful for you all who hold thought and prayer for him, whether I ask or not.  I love you all, and keep praying that we can continue to enjoy Today's Miracle.