Day 1-A Good Report. Playing with science...and ghosts.

We made it to Boston in uneventful fashion...which is always a good thing.  Good flights, no delays or issues.  Our flight left dark and early, which did allow us to see did see a beautiful sunrise.  We had a layover in New York City, so the kids also enjoyed a glimpse of the Big Apple from the air. 

We arrived in Boston, made our way to the Devon Nicole House, one of the 3 family lodging sites of Boston Children's Hospital.  We got settled in, and then headed out for groceries.  We spent the evening at the house, tired from traveling, and went to bed early. 

We got up early and headed to Jacob's first appointment with the orthopedic specialist.  For this appointment, they specifically wanted us to see this specific physician, who was only at one of BCH's satellite campuses this week, so we made our way there, which was unfamiliar territory for me.  But I was happy to do it, as this particular ortho specializes in the care of kids with vascular anomalies which effect the skeletal system.  With the Jacob's lesions' proximity to his spine, this makes her expertise very valuable.  She is the orthopedic specialist that works in the Vascular Anomalies center and collaborates with the other subspecialists on the care of kids with venous malformations and related syndromes.  We have seen her before, but not for a couple of years, as his spine has just gotten bad in the past year or 2, and she was on maternity leave on our last visit.  So we were anxious to see her opinion on how he was doing.  We were very pleased to get a good report! The degree of curvature of Jacob's spine is improving.  It has gone from 18 degrees, to 14, then 11, and now 7, which is mild.  This tells us that what we are doing is working!  We were so discouraged when it got so bad, but the improvement we are seeing shows that the treatments are working, keeping lesion growth at bay, and keeping pressure off his spine.  We just lost a lot of ground when we went 2 years without treating.  But our consistent treatments these past 2 years (every 6 months), have gotten it back to an acceptable level, and greatly improved his spine.  She said his gait looks good, and she said, "Tell Dr. *** (our interventional radiologist who has been doing all of Jacob's sclero) to keep doing what he's doing, because it's working!"  I was so happy to hear this.  I know that this will remain an ongoing battle to keep his spine safe, but for today, I take a sigh of relief, and also lay down my guilt, which was an unexpected gift.  I had a lot of guilt the past couple of years that I had made the wrong decision in letting Jacob go so long between treatments, telling them he was doing fine.  I didn't realize how much damage was being done to his spine.  But to hear that the damage was essentially reversed, as when he was first diagnosed and we made our first trip up here, I believe his curve was 7-8 degrees or so.  So to be back where we started is a grace I never dreamed to hope for.  But I am beyond thankful to He that is able to do exceeding abundantly above all that we ask or think.  Jacob was excited to see that this satellite campus had one of the contraptions with the balls that go all different directions, striking different objects and following a sort of maze (I don't know what you call them), that the main campus does.  We spent a few minutes there, and then left this appointment in good spirits, and had the rest of the day in front of us to do with as we pleased. 

 We headed downtown from the suburbs, and went to the science museum.  It has become one of Jacob's favorite outings in Boston, and I had a feeling it would be for Asa as well.  He loves science so I figured it would be right up his alley.  It certainly was, and both of the boys had a great time.  WE started at one of Jacob's favorite spots, one of the ball maze thingy's like what's at the hospital, but on a much larger scale. From animals to space,  lightning to dinosaurs, we explored every corner of the museum, not leaving until closing time. 

From animals to space,  lightning to dinosaurs, we explored every corner of the museum, not leaving until closing time. The boys even got to dissect an owl pellet (not poop if you're thinking what I thought, but it's still gross). 

 Afterwards, we parted ways, with mom taking Jacob back to the house, and me and Asa staying out on the town.  I wanted to have some quality time with Asa, and thought the night before Halloween, a Ghost and Gravestones tour would be fun, especially in arguably one of the oldest and most historical cities in the country.  We had a great time.  The tour was a lot of fun, and our tour guide was very funny.  I thoroughly enjoyed it, but more so, seeing Asa have such a good time.  It's a tough age, and to have an evening just talking and laughing together, is something I will hold onto for a while I imagine. 

So we had a very successful first day in Boston, many thanks to all who prayed for safe travels and good reports...please keep it up!

On our way...

I'm sorry I've been bad about updating.  I put FB updates out as Jacob recovered last April, but never got around to a blog update from our trip.  It went very well, and we got a positive report from his procedure.  The lesion growth was relatively stable between that one and the previous treatment for the first time ever.  From all the research they have done on Jacob's condition, for many patients, their lesion growth plateaus in later childhood.  The lesions grow in response to growth of the child, and to hormones, and children's growth typically level out from ages 5-10 or so.  For Jacob, we had not seen any stabilization of his lesion growth yet, and as he is now 7, this is a concern.  He still has had rapid growth and no signs of slowing down or respite...until this last one.  With the last one showing more stability of the lesions, I am hopeful that perhaps we have hit the quiet phase of this condition.  I am anxious to see how it looks this time, as they were still hesitant to get my hopes up that he is plateauing, having only seen 6 months of relatively little lesion growth.  I am hoping that if we get a good report this time, that perhaps that is where we are, and maybe even they might feel comfortable going longer than 6 months between treatments.  I will not push for this, as we have experienced going too long between and the impact that had on him, but if they are feeling more comfortable, I will not argue.

Here are some belated pictures of him on the last trip on procedure day...in preop, rolling into the OR suite, and leaving the hospital...he was so brave. 

In the meantime he has been thriving, as has our whole family.  The end of April started our birthday season, with Elena turning 11, followed by Asa turning 13 in June.  July brought Luke's 5th birthday, and Jacob's 7th birthday within a week of each other.

The summer brought baseball for the little boys, where they got to play on the same team for the first time which was really fun.  We spent the rest of our summer swimming and playing outside. We vacationed in July with the family.

And gained a new member of the family when we got back.  Little Via joined our crazy crew, and has settled in well.

 Speaking of new family members, after a tragic loss of her flock to a weasel in May, Elena committed to rebuilding and raised a new flock of baby chicks over the summer.  To help her ensure their safety as well as accommodate the larger number of birds, we expanded her chicken run and built a brand new coop.  David and his dad did it themselves, and did an amazing job!

She now has 1 rooster, 14 hens, and 3 guinea fowl.  It has been a ton of work, but she has done a great job, and now is seeing the fruits of her labor as the hens have began laying.

Back to business, We left early early this morning, and are currently on a layover at LaGuardia, but should be in Boston a little past noon.  We have appointments scheduled Tuesday and Thursday, and his procedure is Friday November 2.  I am hoping we can find some fun activities for Halloween and packed costumes with us.  I figure Boston is a good city to celebrate such a holiday, and am excited to see what we can find to do.  David is not able to go with us this time, but my mom is going, and we decided to take Asa as well.  So the 4 of us are on our way. 

So far I think I'm doing pretty well, compared to my usual.  Honestly I haven't had the time to think about it, nor have I really allowed myself to do so.  I am trying to view it in a routine sense, that we aren't expecting anything out of the ordinary, he is having routine (for him) treatment for his chronic (albeit rare) medical condition...only thing is we have to travel 1,000 miles to do so.  But I am keeping my feelings in check, and taking things a day at a time.  Another aspect that has become routine as well, is the lack of insurance approval for the procedure. They sent me a denial letter last Monday, and I spent another hour and 40 minutes on the phone with them Friday...so that battle ensues, as per our usual.

Please pray for all the logistical details of the trip to work out quickly and in the least stressful way possible.  Please pray for our safety as we go and navigate the city without David.  Please pray for my heart and mind as we walk this road again.  Please pray for every hand that touches my child, that they move with surety, compassion, and utmost care; and may they have wisdom and clarity of mind.  More than anything, please pray for my baby.

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.