Flying for your life: Jacob's Story

As some of you may remember, we had a shadow with us on our last trip to Boston.  A camera crew representing Miracle Flights for Kids, flew with us and filmed some of our journey to Boston, as well as there at Boston Children's Hospital.  They finished putting it together and it is now on You Tube, and tomorrow they will release it on their website, facebook page, and twitter feed.  I wanted to share it with all of you first.  If you want, you are welcome to view it here:

Miracle Flights for Kids is an amazing organization.  They also helped us with our upcoming flights to Boston, and all those to follow.  The financial implications of ongoing travel to Boston are daunting to us, but Miracle Flights has taken a chunk of that burden for us.  We are so thankful to them for what they do for us, and so many other families in need.  Take a minute and view the video, and "like" them on facebook.  The more we make people aware of what they are doing, the more families they can help, as well as hopefully more donations they will get.  So thank you again, Miracle Flights for Kids, for being there for my family, and playing a part in Today's Miracle.

Today

Some days are just harder than others.  I find myself struggling more in the past week.  As the weeks draw closer to our next trip, knowing what's ahead of Jacob is discouraging.  He is doing well.  The pain is under control, at times we can tell it hurts, and occasionally he will say so, but for the most part, he seems to be feeling good.  In light of that, it's hard knowing what he will endure this next treatment. And just leaving home again, this time without David, will be hard.  We knew this road would not be easy, and in my heart, I know right now is "easy" compared to what we could be facing.  So today, I will continue to try to focus on the good.  Encouraging messages and calls from friends about everyday things, ice cream, dinner with my family, my husband who supports and encourages me every day, even the quiet after they all 4 are (finally) in bed. But most of all, I will focus on these 4 little people I am surrounded with.

Asa.  My eldest.  Never has there been another like you.  Another so in tune to the feelings of others in his family.  Another so anxious to help mommy when you sense my worry.  I'm sorry it is ever evident to you, my son, but am thankful for your sensitivity, and kind heart.  The sweet way you take such responsibility for your siblings, looking out for each one.  And I love seeing the unique way you view the world, and how your bright mind works.  I couldn't be prouder of you, Asa.  I love you so much.

Elena.  My baby girl. As I sorted your baby clothes to give to your new cousin, I was reminded of how you have grown.  It seemed like just the other day you were my tiny baby.  So little, so sweet.  Well, you still are, little koala.  I am so proud of your tender heart, and the beautiful way you walk through life.  You love this family so fiercely, so fully, above all else.  You help me to see the joy and beauty in every day things, and my life is ever so beautiful with you in it. I love you, my girl.

Sweet Jacob.  So much we have been through together.  All the difficulties you have faced, and you are still strong, baby boy.   I am thankful for your spirit, your strong will.  And yes, your beautiful face that helps me remember to be thankful for your strong will, even when it is trying.  I will fight for you forever.  You bring so much laughter to our family, you make us see the fun in each day, and not the trial.  I couldn't love you more.

Littlest Luke.  We knew we wanted 4 kids.  When everyone else thought we were crazy, we were unswayed.  Well, it wasn't "4 kids" we needed, it was you. Who you are, sweet baby.  You are exactly what we needed, not just the sum of having 4 children.  Never has a baby brought such joy, such light to a family. Your sweet nature, beautiful smile, even crazy cowlick makes me smile every day.  You keep me grounded, little one.  I couldn't be more thankful for you, and love you so much.

May I continue to see the beauty in our lives, even in days of struggle.  May I always be in awe of these 4 with which we've been entrusted.  May I see them and all I have to be thankful for.  May I be fully present in the NOW, and not overcome with worry about what may be ahead.  

Thank you again to all those who continue to lift us up.  All who still pray for Jake, and for us.  And above all, pray for miraculous healing for him, and if that's not to be, may we bask in "Just Today's Miracle."

Follow up Ultrasound

So last Friday, Jacob had a follow up ultrasound on his back.  It has been 6 weeks since his treatment in Boston.  We have had some technical difficulties in getting our computer to upload the disc with the images to Boston, and thus have not heard from them yet as far as what they think about how he is responding to treatment and how the lesion looks.  But as far as our radiologist here, basically all we got was that the lesion on his back is bigger (which we knew), with more soft tissue and muscle involvement and more dilated blood vessels (also already knew).  What exactly they are looking to see post-procedure, we will have to wait and see what they say in Boston, once they receive the images.

Jacob did great during the ultrasound.  He was upset initially and afraid, but after some bribery (lollipop, paci, and iPad), along with laying with mommy, he did fine.  It took a while, but he laid still perfectly.

Also, Luke's tests all came back normal, which was a relief.  With the VCUG in addition to the renal ultrasound,  the process was a little rougher on him, but he was a trooper, and we're glad he got the all clear.

I am concerned that we got the images they needed in Boston, as our sonographer said she really couldn't see much in his chest, only what's on his back.  From our standpoint, we are hoping that the lesion is so much larger on his back now, because of the increased pressure in his chest from it shrinking is pushing it out. But honestly, we have no idea.  We have many questions and are anxious about this next trip and treatment.

Thank you for all of you who continue to pray for Jacob.  Please specifically pray for Jacob's health and safety.  We are worried as it appears Jacob's spine is curving.  It may just be from the pressure that has been projected onto his back after his intrathoracic (inside his chest) treatment, and will be temporary as the lesion hopefully is shrinking.  But this is of great concern for us.  Please pray for wisdom in the decisions we make in his upcoming treatment, and for the doctor's as they pursue the right course of treatment for Jake.  Thank you all for your support and prayers, and as always, pray with us for "today's miracle."

March Update

Sorry it has been a while. I know many have asked how the little guy is doing...we have been very busy since we returned from Boston.  Jacob is doing well.  Though overall his recovery has been rougher than we expected, he is pretty much back to his old self.  He has been off his pain medication for a few weeks now.  He still has pain periodically that he complains about. There are other times we can tell he is hurting but he doesn't complain, nor do we ask him so as not to draw attention to it.  He is a tough little guy, and I am so proud of him.  He has a follow up ultrasound here in Chattanooga on Friday that we will send the images to Boston for them to review.  Hopefully this will show them how he is responding to the treatment, and hopefully the lesion in his chest is shrinking.  Though it is not easy to see the lesion in his chest with an ultrasound, they do not want him to have to be put under for an MRI right now, so they are going to try to see what they need with an ultrasound.  Pray for him Friday, as although an ultrasound is non invasive, he does not like his back touched at all, and any pressure on the lesion causes him pain.  Needless to say, I am not looking forward to this, and hope it isn't too difficult for him.  For those who don't know Jacob well, here is a video of him at Riverpark...so many only see him when he isn't well, and thus always think of him like that. But mostly, since recovered, he is playing, laughing, and happy.

As far as the rest of us go, we are doing well.  David is busy with school, and working on his National Board Teacher's Certification.  It is a big undertaking, that he has been working on for the last 2 years, and this years work is due in April, with testing to follow.  So he has been very busy working on this.  I had eye surgery a week after we got home from Boston, to refract my vision and repair one of my eyes that was damaged from an infection a couple years ago.  I am doing pretty well since and it is exciting being able to see for the first time without contacts or glasses.  They still aren't sure of the final result yet, and I may still need an enhancement surgery, but overall I am doing well.  Luke came home with a cough from Boston, and after 10 days of antibiotics, he got pretty bad diarrhea, which resulted in him getting a UTI.  After 3 days of very high fever and a miserable baby, testing and antibiotic shots; he is better, but is scheduled for a renal ultrasound and VCUG to follow up, both also next Friday.  Jacob won't be the only one unhappy that day, as I will have my hands full with 2 unhappy little boys after their procedures.  Asa is doing well, continuing to excel in school, and looking forward to spring and lots more playing outside.  He has been extremely helpful and sweet since we returned; I am so proud of my eldest.  Elena is also doing great.  Because of school cancellations from snow while we were gone, we made it home for David to take her to the father-daughter dance at school which she was ecstatic about.  It was a special time for them both.  She is looking forward to her birthday next month, and we hear all about it and her upcoming party daily!  They are all just growing up so fast...

Because it's at the end of the school year, with exam prep and testing, David will not be able to go with us to Boston this next trip.  My mom is going to fill in and come with us, as I will need help with Luke while Jacob is in the hospital.  David and I are very disappointed he cannot come, but I am thankful my mom is able to go.  We got our plane tickets booked (Mine and Jacob's again courtesy of Miracle Flights for Kids), and we are also reserved to stay again at the Yawkey Family Inn (patient and family housing at Boston Children's Hospital).  Our trip will be shorter this time, as we won't have all the appointments.  We will just fly in, have his procedure, recover and come home.  So we are scheduled to fly out April 27, and back home May 5.  Hopefully this time there will be no surprises, and we will be able to keep to this plan.  I am not anxious to leave half my family, and it's hard to think about Jacob going through all this again so soon, as he's just now feeling better, but we will do what we have to do to keep him healthy.  It's just hard to think about right now.
Overall, life has returned to normal, and that's how we'd like it to stay between Jacob's health trips and issues.  Our little family is amazing and we are so thankful for each one.  Thank you to all who continue to think of us and pray for today's miracle!  In closing, here are a few pictures from the past few weeks.  Love to you all from the Casteel's!

with their cousins at the park

Rare Disease Day

A disease is defined as RARE in the United States if there are fewer than 200,000 people living with it in our country.  Our 2 year old, Jacob, has Blue Rubber Bleb Nevus Syndrome, a vascular condition that causes overgrowths of blood vessels throughout his body.  It is one of the rarest of the rare conditions in that there are less than 300 cases EVER reported in literature since this condition was identified, and fewer than 150 people living with BRBNS in the world.  We are hopeful that the Global Genes Project and the doctors at Boston Children's Hospital will one day find the cure to his condition, and until then, we will tell our story and raise awareness for his and other rare conditions.

Today is worldwide Rare Disease Day! It is not a day that garners much attention, certainly it never did by me until this year.  The essence of what makes Rare Disease Day is that by being member, you automatically experience isolation in your battle.  In our case, Jacob has one of the rarest of the rare diseases.  After Jacob's diagnosis, we felt very alone in that we knew so little, our doctors had so little information, and most (including us) had previously not even heard of his condition.  In our search for answers and care for our son, we have come across only a few on similar paths, but each has brought us hope. So has the knowledge our family and friends have sought while walking beside us.  We no longer feel alone on our journey and are fortunate to have a wonderful support system of people who love us, as well as an amazing medical team both here at home, and in Boston that understand, and are learning more about Jacob's condition.  I think this day is so important to combat the isolation so many feel in fighting their rare disease, as well as to raise awareness for so many conditions that are otherwise unknown to the most people.  As I said before, learning more about his disease, and finding others who understand it as well gives us
which is what Rare Disease Day is all about.  Hope for a cure. Or at least hope for a little understanding.  By reading his story, you have understanding of the path he walks. As he grows, I hope he continues to find understanding and compassion in those he meets.  We thank everyone who  has followed Jacob's journey, as by doing so, you are showing your support for Jake and people like him living with rare conditions. If you'd further like to support Jacob and others with rare conditions, you can change your profile picture today on facebook to this:

Also, even though we do most days, wear jeans today with the awareness of those struggling with rare diseases and the hope that the answers may lie in their genes.  I love my "rare" boy, and thank all of you for loving him too.  Keep praying for today's miracle!

Boston Roundup

We are settling in to normal life again back home. It is so good to be home and have my family all back together under one roof!  We missed our big kids so much; Jacob was so excited to see Asa & Elena! It was so cute, their little reunion.  Luke was happy to be home, as the last few days of the trip were kinda rough for him, as he is working on cutting his first tooth.  We are all thrilled to be back, and had a great trip. We are still exhausted, but hope to get caught up and back to normal soon.  Jacob is still experiencing a lot of pain at times, which they are not surprised about.  We are continuing to medicate him and keep him as comfortable as possible.  He is getting better each day, and I anxiously look forward to him being back Jake again 100%.

So I promised that I would try to give a better update on the specifics of what we learned in Boston about Jacob's condition. We were so overwhelmed with all we learned that at the time it was too much to process and be able to explain, not to mention the fact that my family needed my full attention and time.  Now that we are back home, to our old nap routine, I have a few minutes.  This is a bit lengthy, so I understand if many aren't interested, but for my medical friends and all who are just curious, read on.  We met with and spoke at length with multiple specialists, and here are some of the highlights of what we learned about Blue Rubber Bleb Nevus Syndrome.

• We can cross off our worry list brain lesions. If they do occur, they do not tend to bleed, so rarely that they do not even screen for these lesions. Though it is listed in literature as a possibility, in their experience, they have not seen this.  We are happy to lay that huge concern to rest.  
• Jacob falls into a smaller group of patients with BRBNS that have what they call a "mother lesion." This is a large, centrally located lesion outside of the GI tract.  The patients with a mother lesion are usually a little more complicated to manage simply because of the size and complexity of these lesions. Jacob's "mother lesion" is even larger than we realized, and surprised the doctors up there with its size when they began his procedure.  Jacob's consists of a large, as well as multiple small lesions on his back extending from scapula down to lower back on the left side with additional smaller lesions up and down his right side (which we did not know).  On the left side, it reaches between 3 of his ribs and expands within the space of his chest (which we knew), but additionally, attaches to and invades his pleura (which we did not know). This is a unique characteristic previously unseen by the Vascular Anomalies Team.  This also explains how he got the hemothorax after the first sclerotherapy treatment in Chattanooga, and because of this, the Boston doctors used a different approach in their sclero treatment. Unfortunately, this attachment to the pleura increases the pain Jacob will experience with flare ups of this lesion, and as well as with treatments.  The pleura is highly innervated, and these nerves when irritated, cause pain with each breath.  Good news is that Jacob will not grow another lesion somewhere else the size of this one.  Mother lesions are present at birth, and continue to grow, but a new one will not grow elsewhere to this size and extent.  It is unfortunate that Jacob's is in such a precarious place with its proximity to his vital organs and spine, but we will simply have to aggressively monitor and treat to prevent problems. Sclerotherapy is the treatment of choice, as surgical removal is not a viable option. We will continue treatment to keep this lesion small and safe for Jacob as he grows. 
• Jacob's skin lesions will continue to grow (and he will likely get more), though usually fairly slowly and should cause minimal problems other than cosmetic. If the location causes them to be painful like on hands or feet, they can be injected or removed if necessary, though may return later and require future treatment. Most patients don't report many problems with skin lesions other than on their feet.  Some of his skin lesions however, as they grow, may punch through the skin, and if on his feet could cause pain and bleeding requiring intervention.  The dermatologist did identify a couple of Jacob's skin lesions as being simple Nevi, and not BRBNS lesions, so unlikely to grow or cause problems. 
• The MRI we got in November, though necessary for his chest lesion, including the abdomen and pelvis was a waste.  We were so excited then to see no intestinal lesions, but only extremely large intestinal lesions would show up on a MRI which he is unlikely to have at this age. MRI's are just not good for diagnosing intestinal involvement; this must be done by endoscopy.  Upon examining Jacob, the GI specialist felt certain that he does have intestinal lesions, as at this age they usually mirror the skin lesions, with the GI lesions increasing with age.  Thus he expects that Jacob probably has a dozen intestinal lesions, give or take, but obviously not large enough yet to cause him to have GI bleeding. Virtually all patients with BRBNS experience GI bleeding, but with varying ages of presentation, most commonly during early childhood.  He expects Jacob to have this eventually, so we will continue to routinely check his blood counts and screen for this.  Most of the time, initial presentation is slow bleeding, not acute massive hemorrhaging. So if and when he presents with GI problems, we will get back with him to decide on management.  He will need scoping at that time, which we will return to Boston for, as they have pioneered new techniques for this for BRBNS patients.  If bleeding stays slow and manageable, they will treat conservatively with Iron replacement and blood transfusions when necessary.  Once this is insufficient and chronic anemia is severe enough, we will explore other options.  They have pioneered certain surgical techniques for removal of lesions when necessary.  However, the surgery to remove the GI lesions is huge, difficult, lengthy, and messy, and with results lasting anywhere between months to many years, depending on the patients disease progression.  It is usually impossible to remove all the lesions, and they will return as well. The good news is that with new medication therapies, they are hoping this surgery will become obsolete. More on those later... Overall, we learned a lot about the GI aspect of this condition, which is the primary problem for most patients, and feel more prepared for the possibility (or probability) of this complication.  We also we told what to do if he has other issues related to intestinal lesions here at home, what to tell our doctors here, and what to ask them to screen for in an emergency.  
• We met with the Hematology/Oncology doctor who works with the VAC team to treat BRBNS patients about the medication options.  He said the advances they have made in the past 2 years have been dramatic.  They are currently seeing great results using the drug Sirolimus (or Rapamycin), which is most commonly used for transplant patients for anti-rejection.  It is eradicating GI bleeding in many patients, which is why they hope to not need to do the intestinal surgery much anymore.  What they do not know is what happens when they take you off this medication.  They have one patient who has been off it for a month, so they are hoping to figure this out.  They recommend staying on it for 2 years, but are unsure if the risks are worth staying on it longer than that.  It is immunosuppresive and has several other side effects, though they are minimizing those by frequent checking of drug levels, and adjustment of dosage. If Jacob requires this therapy, they would work with our Hem/Oc doctor here in Chattanooga to administer and monitor as necessary for the duration of his treatment. One thing they do not know yet, is if this drug has any effect on "mother lesions."  So far they are only using it for patients with persistent, untreatable GI bleeding.  As they learn more they would like to expand the scope of treatment to other patients to see if it would help these large difficult to manage lesions. They are firm though in their approach when deciding whether to use this medication in that their treatment side effects should not be worse than the presenting problem. Currently, Jacob is doing well, healthy, and pain free (other than his recent procedures).  Thus any side effects would be worse than what he is currently experiencing from his condition, so he would not warrant treatment. We are relieved, as that is how we were leaning going into it.  It's good to know we are on the right track in our approach to his condition.  It is also exciting the prospect of medication therapy if he needs it in the future.  The doctor was so knowledgeable and easy to talk to, and he said if at any time we question how Jacob is doing and whether he would benefit from this, to call him, and we would discuss it.  So for the time being, we will keep this option in our back pocket and hope for further advances in this area.  
• We met with the primary surgeon who is the leading expert in the world on this condition (who also performed the lesion removal aspect of Jacob's surgery).  He is still actively with his team researching this condition and its complexity.  We consented to assist in this endeavor, which was easy considering our investment and potential to benefit from this.  We consented for him to take the lesion he removed, 12mls of Jacob's blood, urine sample, and swab of his cheek cells for research.  They have isolated the specific gene mutation that causes BRBNS.  Essentially, this gene controls the development of the blood vessels. This mutation causes a defect in the vessel walls.  The walls of the vessels are supposed to act like rivers, keeping the blood contained within the "river banks." In BRBNS, these walls are weak, allowing at any given time, for a vessel, or river, to weaken and expand, becoming a "lake." There, is will just continue to expand with nothing holding it in, and fill with more blood. These "lakes" are what we see as lesions, expanded blood vessels full of blood. Thankfully, the walls will continue to expand and hold the blood in, except in the GI lesions.  They don't know why these don't hold, and instead break and bleed, possibly because of the constant motility of the GI tract, and food moving through?  Other than those though, the lesions will fill and grow unless disturbed (as in the case of the lesion in Jacob's chest when it bled).  At any rate, in their research, they are trying to create a mouse model, or essentially give BRBNS to a mouse (sorry animal lovers-I want my baby cured), to expand their options for exploring new drug treatments.  It's one thing to guinea pig a child for a new drug therapy, another to try it on an animal.  They are hopeful that if they can create a mouse model, that they will learn a lot about this condition, and if not cure it, at least make living with it much easier. Also, improved drug therapy would decrease the surgical requirement of BRBNS patients, which is huge.  Anything to reduce harm and pain to my child's body I am all for!  It is amazing to me that with their registry of only 60 patients with this condition worldwide, that they are so motivated to finding answers.  I am grateful for the brilliant minds at Harvard University Medical of which our Boston Children's Hospital doctors are a part, and sincerely hope Jacob's contribution helps them find a cure. 

So overall, we learned a lot about Jacob's condition, and how we will work with the team of doctor's in Boston to keep him healthy.  It was an amazing experience.  I was so impressed by the collaboration between different disciplines that is rarely seen in medicine.  These doctors are so comfortable working together, diagnosing together, consulting with each other, communicating treatment plans,  "sharing" anesthesia, even working with another discipline during a procedure.  This is essential with a multisystem condition such as Jacob has, and it is reassuring that they won't be contradicting each other with his treatment plans.  I am also thankful for their desire to work with our doctors here in Chattanooga to ensure continuity of Jacob's care.  We have a great Children's Hospital here and I am thankful for wonderful specialists that are motivated to learn more about BRBNS and give Jacob great care here at home.

The most reassuring thing we experienced in Boston was the comfort with which they approach treatment of BRBNS. They understand this disease and are confident in treating it.  It is such a scary place to be when no one knows your child's condition.  Most of the doctors we have encountered up til now (with the exception of our diagnosing physicians) had never heard of it.  And to suddenly be where doctors specialize in the rarest conditions, and thus they become more commonplace, is such a relief.  They were quick to tell us that by far BRBNS is the rarest condition they encounter, but still their knowledge makes it easy to entrust our child to their care.  Their solidarity in treatment and ultimate goal of nothing less than a full and happy life for Jacob, and united approach to achieving that gives us confidence, and as I previously stated, most importantly, Hope.  We have hope that with the knowledge and skill they have been given, our son will be well cared for. But may I never forget that Jacob's life rests in the hands of the Great Healer, and in Him I try to place my trust.  "Today's miracle" would keep us from needing the help of these doctors, and would spare my son future health problems.  So while I am thankful we have them, I will continue to pray for today's miracle and hope for that above all else.

Thank you as always for your support and prayers. Here's some final pictures of our last day in Boston, and I will try to keep you updated with how our boy is doing.  Thank you for being part of our journey.

Ready to go home...and bringing something back...

Well, we were supposed to have gone home 2 days ago, but because of Jacob's extended post-op hospital stay, and then the weather, we are still here in Boston.  We have pretty much stayed in the Inn all weekend to let Jacob recuperate.  He is doing well, but still requiring regular doses of pain medicine.  He always wakes up hurting as well, which hopefully will get better in the coming days. Though not quite completely himself yet, he is getting there.  We were not prepared for such a difficult recovery, because last time, Jacob was in so much pain, and doing so poorly before the procedure, it wasn't so much of a difference as it is now.  Next time we will know more what to expect and plan our return travel accordingly.

Speaking of next time, Jacob's doctor wants us back in 8 weeks for his next treatment.  With the large size of his lesion and the location of it, he wants to work to aggressively shrink it to a level that is safe for Jacob and that we can maintain with (hopefully) yearly treatments to keep it small. All this will depend on its growth, which is impossible to predict, but we are happy to have a plan in place, although he said it may take several treatments initially to achieve the desired result we can then maintain. So this means we will be back mid April, and then again likely this summer.  At this point, it is exhausting to think about coming back so soon, but at least the weather will be better. We have enjoyed the snow at times, but it does make getting out and about difficult when walking with 2 small children.

Overall, it has been a pretty relaxing weekend, as it goes.  The boys have enjoyed being here at the Inn, as we have been able to keep more to their schedule, and it is much more home like.  Here are some pictures of them here throughout the week. Before surgery...

After surgery...

It has been a great trip overall.  We are still coming to grips with the idea of Boston becoming our second home, but if you needed one, what a great city!  We really have fallen in love with Boston and its people.  For such a big city, everyone is so friendly.  I expected to annoy the locals a bit with our perpetual state of slow moving and being lost.  But everyone was so nice.  We would be standing on a street corner trying to decide which way to go, and more than once someone would stop and ask us what we were looking for and help us find it.  Everyone we asked for directions did not hesitate to help us.  On the subway, I always had at least 2 people offer me their seat when I stepped on with my baby strapped to me.  Bostonians take pride in their city and appear to want visitors to appreciate it as well.  And the hospital, I cannot say enough good things about Boston Children's Hospital. What an amazing place.  It is like being at the United Nations, as there are so many people from all over the world who have brought their children there to be helped by the best in the world.  For many, it is the last chance place.  Where you go when no where else can help your child.  The thing that struck David and I the most was that you would think it would be kind of depressing there with so many severely ill kids. But there is such an air of excitement at Boston Children's Hospital.  Everyone is so happy to be there.  The doctors and nurses are so excited about helping your child.  When we voiced our concerns about Jacob's future, all the doctors were like, "We expect no less."  Their goals weren't to just help him survive, but to live the life he wants. And they are actively looking for a cure.  Imagine, they have a registry of 60 patients in the world with this disease, and they are searching for answers. They are not content with current treatment options, but are continuing to pursue better.  It doesn't matter to them how few will benefit. My son alone is enough. Their motto is "Until Every Child Is Well."  And they mean it.  And all the parents we talked with, regardless of condition, what brought them to Boston Children's Hospital was the same thing.  A chance at a better, fuller life for their child.  Healing.  Answers.  And that's what brought us here. What we are bringing home from Boston was something I didn't expect...what I saw in the other parents here...

Hope

That's what I am bringing home with me.  Hope for a bright future for my Jake.  Thank you as always for supporting us on this journey, and keep praying for today's miracle.