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.
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