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." 

Updates and Apologies

Well, I did it again, after our trip in October, I never took the time to post an update of how his procedure went, and somehow 6 months went by. (*update: when I wrote this...now its been 11months, sorry, I never published).  I'm always so focused on him post-op, that I don't take myself away for an update, and once we get home, life just keeps going so fast, I can't seem to get around to it.  Once things settle down, you all know my coping mechanism of avoidance, that also plays a role in keeping me from thinking about it or putting down my thoughts.  But in gratitude for all of you who hold thought or prayer for Jacob, I owe you an apology, along with an update.

So rewind to November 2...we arrived at the hospital bright and early, as he was the first case of the day.  We spent some time in pre-op, and Jacob was in great spirits.  He and his brother kept each other entertained, Jake even did some dancing on the bed!

 Before we knew it, it was time to roll back to the OR.  They had a new fancy TV back there, which they could put a number of things for the kids to watch as they go to sleep.  Upon being reminded that Jacob wants to be a diver when he grows up, and that is how we practice for anesthesia, they put a ocean scene up.

He slid over onto the OR table so bravely, and held my hand and watched the TV as he breathed into the mask like a diver. I was so proud of him and the courage he showed.  I could tell he was nervous, but just did as instructed and we talked until he was asleep.  I left him in their capable hands and found my way back to mom and Asa in the waiting room and settled in.  His procedures are always long and involved, and this one was no different.  We were kept updated throughout as usual, and by noon his doctor was out to see us.  He was very pleased with how it went, and how stable the lesions were since the last treatment.  This was the first time we have seen any stability from one treatment to the next.  I spoke before that we were hoping to be hitting the "dormant phase" of later childhood, and this stability seemed to support that possibility.  His doctor was so pleased, he hinted at maybe letting us skip the next treatment.  We have been going to Boston for treatment every 6 months for years, but he said if it stays this stable, we may be able to skip the May treatment and go for a year.  He said no promises, he still wants to see imaging in 6 months (which we can do at home as usual), and that he doesn't feel comfortable going longer than a year for sure without seeing him, but at least there is a possibility of Jacob getting a break in treatments.  We are so excited about this possibility; though we are more than willing to go as often as necessary to keep him healthy, a break would be wonderful for him.  So this was great news!

Before long, we were taken to PACU to wait for him to wake up.  That is always the longest wait for me, putting my nurse mind over my mama heart to not let myself wake him up.  He's so beautiful though, just watching him sleep.

He soon woke up, calmly and relatively comfortably...all the thanks in the world to the BCH anesthesia team to figuring out the perfect cocktail for my guy! So glad they cracked this code and we enjoyed a 2nd peaceful wake up in a row.  Hopefully gone are the days of those difficult anesthesia wakeups.  He was still having some pain as is expected but again amazed me with his bravery.  I had a moment, as this was the first trip he hasn't wanted me to climb in bed and hold him afterwards, but instead wanted his big brother.  But I couldn't be too sad as they looked so sweet together, I couldn't hardly look away.

It has been so special having Asa on this trip.  Jacob's siblings have always been such a comfort to him, and this trip was no less so.  I was so glad Asa was able to be there for Jake, and it warmed my heart to see how protective and caring Asa was of Jacob.  These new teenage years we are navigating have been filled with ups and downs, but to see Asa's care for his brother...I could not have been prouder of him.

Jacob also kept his streak alive and did well enough post-operatively for us to go home that evening!  I was so excited that he was doing so well for them to let him go.  We made our way back to the house and rested for the evening.  We stayed pretty low key until after lunch the next day, by which time Jacob was feeling well and both boys were feeling restless.  We decided to venture out and visit somewhere new we'd never explored before.  We headed over to the Harvard campus, which is always beautiful, but with the leaves turning, was especially so.

We then went to the Harvard Museum of Natural History.  We'd never been there before.  It was really cool, and ended up being a favorite of both boys this trip.  They loved all of the animals and bugs, but surprisingly they enjoyed the rock formations room the most. It was really cool.

We kept it a short outing, looking out not to let Jacob overdo it, and headed back in for the night.  The next day, the boys wanted to go to the New England Aquarium, one of Jacob's favorite places in Boston.  The hospital gave us tickets which was nice, so away we went.  We caught the penguin feeding which is always fun, and had a nice day.

We left Boston the next afternoon, and had an uneventful trip home.  Jacob was back to school within a day or so, and life returned to normal.  I look back on this trip now months later, and what stands out to me, was the beauty of my sons' relationship with each other.  Being 6 years apart, often they fight and annoy each other, but during this time, all I could see is love.  So many times as a parent, I question myself...are we doing ok, are we raising them right?  Seeing the love and care they have for each other makes me think maybe so.  I watch Asa and see these glimpses now of who he is becoming, and the responsibility I feel for him to be a good man is so heavy.  But he is such a good kid, and has such a kind soul.  Seeing him this week with his little brother was something I'll bring to mind whenever I'm blinded by the difficulties of raising a teenager.  And seeing the love between them shining through the hurt and the challenges Jacob faces is a light in the darkness.  I couldn't be  prouder or love them more.

Thank you all again for thinking of us and praying for Jacob.  We really had a great trip.  I'm thankful for my mom for stepping in and going with us this round since David couldn't.  She's wonderful with the boys, and such a support for me.  Glad to round out Boston trip #8 in the books. 

Again, I'm sorry for the delay in the update...I'll try to do better, but concede, I probably won't.  I half keep this record for myself, to remember, process my feelings, and to keep all the medical details straight (especially in those early years).  Just know if I'm quiet, were just busy over here living our lives!