It's OVER... for Now

WE DID IT!!!  Three years, 11 surgeries, 11 trips to Chicago, 40 fills and 12 expanders over 5 rounds, two infections, and one emergency surgery -- and it's time to sit back and rest INDEFINITELY.  We didn't make it as far as we had hoped with surgery #11, but we've gotten as far as we can for now.  Dr. Bauer's exact words were "It's time to accept that you're DONE!"  And just to make it official, I will NOT have a surgery on Dr. Bauer's calendar in 2014.  Yipee!

Dr. Bauer was able to work on some more private areas in this last surgery, but unfortunately could not remove any more from my back because my skin lacks the tissue and elasticity it needs for further excision in that area.  He wants me to spend some time (a few years at least) growing, and then he will re-evaluate and we can consider further excision.  For now, I think we are safe in saying that I am about 90-95% nevus free!!!  These last three years were more than worthwhile, and we are so thankful that we were able to accomplish this.   

To top off this good news, I am happy to report that surgery #11 was definitely the easiest surgery I have had thus far.  It was excision-only, which meant that I did not have to deal with drains.  What a blessing!  Pain was exceptionally manageable.  Indeed, I didn't take any pain meds after leaving the hospital.  Yup, I'm tough as nails!  And my incisions healed perfectly.  Everything looks fantastic!

So I'll be taking an extended break at this point, and I couldn't be happier about that.  It's time for me to live the life little boys should live.  To be the awesome little guy I am.  And to forget about doctors, hospitals, surgeries, drains, expanders, needles, lidocaine, and all the other things that go along with this process.  It will all be there when I need it in the future. 

I want to thank everyone who accompanied me on this journey.  Who prayed for me.  Who sent me good thoughts and positive vibes.  Who was there for us to lean on in tough times.  This road has been long, and bumpy at times, but we made it through.  And you definitely helped us along the way.

I also want remind you of why I've gone through these surgeries, and why we created this blog.  The underlying fear that we will always have is that I could develop melanoma because of my nevus.  The risk is approximately 5%, which may not sound like a lot, but to us ANY added risk is too much risk.  We are hopeful that the removal that's been done will reduce the risk even further, as Dr. Bauer was removing nevus cells from my inside body along with the nevus skin on top.  But continued prayers that I remain the healthy boy I am today are definitely requested and welcomed! 

A primary reason we spent time writing about my nevus and my experience was to keep everyone who loves and prays for me up-to-date about what goes on.  But we also created this blog to spread awareness and acceptance of Congenital Melanocytic Nevi, as well as any other unique condition that a person may find himself with.  It's certainly eye-opening to view the world from this side of the table.  The perspective we have gained is priceless.  And we hope that we have been able to share that perspective with you.  We are also overjoyed that this blog has helped others who have found themselves in my family's position.  Over the last few years we have received emails from parents who found this blog fortuitously, and it spoke to them in ways that only one nevus family can speak to another.  It's been wonderful being able to use this experience to help others.

On that note, we recently received an email from Emily Walsh, the Community Outreach Director for the Mesothelioma Cancer Alliance.  As our passion is spreading information and awareness about CMN, Emily's is to make people aware of the dangers, prevalence (even today), and science behind Mesothelioma.  Please check out Emily's blog and the Mesothelioma Cancer Alliance website, and help to pass it along.
http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm

http://www.mesothelioma.com/mesothelioma/     

And as always, remember to check out http://www.nevus.org/ for more information and to follow scientific discoveries with regard to Congenital Melanocytic Nevi and Neurocutaneous Melanosis.  And please, before shopping on Amazon, use the link on the Nevus Outreach homepage to transfer to the Amazon site.  6% of your purchase will go right back to Nevus Outreach, Inc., and will support me and all of my fellow nevus-owners.  This condition is rare, and the research is sparse. Anything and everything helps.  Thank you for your support. 

With all my love,

Joshua

Lookin' GOOD!

Tomorrow, I will be 5 weeks post-op.  Normally at this stage, we are doing wet-to-dry dressings three times a day, bundling me in an ace wrap, and cringing each time we unwrap it in fear of what changes may have happened during the day.  But, no sir, not this time!  This time is a rarity.  This time, we get to enjoy "the way it should be."  This time, I am FULLY HEALED at 5 weeks post-op.  It's about time we say it -- this was a (nearly) complication-free, 100% successful round of expansion!!!

My sutures were removed in the OR, under anesthesia, 2 weeks ago.  And as of yesterday, all minor abrasions were fully healed.  Mom sent Dr. Bauer some new photos and he agrees that we are in tip-top shape.  Nothing to do now but get back to a totally normal life, which we have been embracing with open arms.  Life. Is. Good.

Here I am, in all my glory, 100% healed after surgery #10....

The redness will reduce with time.  And eventually, the scars will be thin and light.  We are more than happy with the results thus far.  And, yes, we will be going back to Chicago one last time to finish things up.  Dr. Bauer agreed with our ideas for the final surgery, and it is scheduled for November 22.  We pray that it goes on schedule and that we actually do finish my surgical journey in 2013.  This is an amazing feeling... although we don't want to get ahead of ourselves.  The real relief will come when it's all over.  Please continue to pray with us for a smooth ending to this long and bumpy road, and for my NCM to continue as asymptomatic.  We are so very thankful that God has brought me to this point, and we know He is listening and watching over us.   

OH YEAH!!!

Surgery NUMBER TEN is HISTORY!!!  And, moreover, so are my bubbles!  At least, we think they are.  Dr. Bauer confirmed that the expanders he removed last Thursday should be my last.  Time will tell, but it was good to hear that after 2 1/2 years of continuous surgeries.

I am doing great, as always, and have since just hours after surgery.  My surgery was at 1:00 p.m. and we were able to leave the hospital later that night.  Indeed, by about 6 p.m. I was asking for pancakes and sausage, and was already saying that I had "no owies."

On Friday, I was a little sore, so we played it low key.  But by Saturday I was raring to go again, and even asking to play on a jungle gym at the Legoland Discovery Center.  Yep, I bounce back nicely, that's for sure.  On Sunday evening I was having fun chasing my sister around the hotel courtyard, and mom had to repeatedly stop me from running!  I'm sure you guessed it -- my activity level hasn't dwindled at all since this surgery.  I still can't sit or bend real well, but I'm taking it easy where that's concerned, and I don't complain about it at all. 

So, where do things stand???  Well I am happy to report that I am about 90-95% Giant Congenital Melanocytic Nevus free.  I will never be entirely nevus free -- I will have satellites, I will have scars, and I will have NCM.  But with my giant nevus practically gone, we pray that the risk of melanoma I was facing has reduced as well.  And we pray that my NCM remains asymptomatic.  With that, I am ready to start living the life that we've dreamed of.

Ok, I'm sure you want to check out Dr. B's handiwork.  So here you go -- the first collage is a picture of me as a baby, before any medical treatment on my nevus, next to a picture of me one day post-op last week.  And the second collage shows a little bit of how the nevus had wrapped around my sides, along with current pictures of how the nevus was removed from the sides. Keep in mind, it took 10 surgeries to get me here.  But it was well worth it!

Yup, we think it looks pretty great.  Spectacular, actually.  We couldn't be happier with the progress here, and with the love, care, and amazing medical treatment I've gotten from Dr. Bauer and his staff.  And for sure, God has had his hands on me, protecting me and producing the results we were hoping for.  Thank you for all of your prayers through this journey.  He is listening!

Are you wondering where we go from here?  Ah, the options.  Option #1 is to stop.  There is little nevus left, and much of it is not visible.  You can see the patch at the top of the buttock, and there is some still in the perineal area as well.  Option #2 is to attempt to wrap this up with one final surgery.  Wanna guess which option we are going for???  Yup, Option #2.  We've come so far, and invested so much, it would be silly to stop now.  Dr. Bauer may not be able to get every last square inch of nevus, but we see no reason not to try.  With the nevus he removes on the skin, he removes the cells below the skin.  And we believe that is where he reduces the melanoma risk.  So, at this point, we look forward to November 22 as my next, and hopefully FINAL surgery.

In about 10 days, I will go into the OR again to have my sutures removed.   For now, my incisions are stable and healing nicely.  There are some indications of stress, but they have yet to split open, unlike they have in the past, and despite my active nature.  We hope they remain intact for the duration of my healing.  We will post an update in a few weeks, when the healing has progressed a bit.

And now it is time to enjoy life.  The way we should be.

And that's all she wrote...

We did it!  We made it through this round!  Well, technically, there is another week to go, but at this point any complication should not be cause for emergency surgery.  So, we dare say WE DID IT!!!

Mom and dad did my final fill of the round -- and hopefully my final fill ever -- tonight.  We waited a few extra days because these bubbles are pretty tight.  And the fill went about as expected.  Not a lot of volume, but it didn't matter because we had already met the 500cc goal in each expander, so anything more was just good, old-fashioned, scrumptious gravy.  And the final tally: 540cc in my right expander and 570cc in my left.  Well done indeed!!

Yup, I'm a sweetie.  Just hanging out
after my injections with my
all-time favorite possession -
my "Tiggy".

A whoppin' 570cc left and 540 right!

A real 'diaper thong'.  Check this out
Saturday Night Live (circa 2003)!

We leave for Chicago in just 4 days.  The relief is starting to set in.  Dr. Bauer will return from his 5-week vacation on Monday, and then we can definitely breathe a sigh of relief.  One of the thoughts hanging over mom and dad's heads the last few months was 'what if there is an emergency while Dr. B is out of town???'  Well perish the thought!

So this is it.  The time we've been waiting for.  The real deal.  The big one.  Which means, I really need your prayers right now.  This is going to be a rough recovery, ya know, given the location of where Dr. B will be working.  So please pray that I don't get sick between now and surgery, that surgery goes well, that I remain complication free for the remainder of this round, that I don't develop any infection pre or post-surgery, and that my pain is managed.  I am strong, brave, and tough... but I still appreciate the prayers and good thoughts.  My surgery is one week from today, June 13.

We've done our part, and done a good job with it.  I will return to Dr. Bauer with a lot of beautiful new skin.  And that is something he really likes!  We can't wait to see what he does with it.  We pray for God to guide Dr. Bauer's hands, and we pray that we finally, after over 2 1/2 years and ten surgeries, get to hear those three little words: "No more expanders."

Almost there...

That sigh of relief has not yet arrived, but we are almost there.  Just about two weeks to go and we can breathe again.  But we have come a long way from the rocky start of this round, and things continue to be stable.  We'll take that!

My bubbles are really something!  And, if you can believe it, BOTH of my expanders have REACHED CAPACITY!!  Yup, we have met the 500cc goal for each expander, even though we have 2 fills left in this round!  Precisely, my expanders are currently at 545cc (left) and 500cc (right).  So while we have had a small share of problems over the last 10 weeks, God has certainly graced me with good volume.  We continue to pray that I do not develop any sort of infection or skin damage, and that the skin recovers nicely after surgery as well.  Your prayers for these things are appreciated as well.

Check these bad boys out...

We often get this question: "How in the world does Joshua sit down?"  And the answer is: "Just as he always has."  It's true - these expanders have not impeded me AT ALL.  I sit, I lay, I run, I play.  I do all the things I always did and I don't even notice these jugs.  They don't bother me in the bath.  They don't bother me in the car seat.  They don't bother me in bed.  Or anywhere else for that matter.  That said, I don't always choose to sit on my bottom.  It's just easier to sit on my knees.  But when I have to sit on my bottom, it's no problem.  What a relief that has been.

The real challenge is going to come AFTER this next surgery.  While there isn't much nevus left, this is going to be a big one.  It's a matter of getting to the area that we've been afraid of getting to all these years.  It has to be done; no doubt about that.  But I have a feeling I'm going to like it even less than I like the other removal surgeries I've gone through.  Please pray for me to have a good recovery, good healing, and good pain management.

Because we are still proceeding cautiously, we will probably combine the last two fills into one and just do it mid way through the rest of this round.  My expanders are very tight, and are not softening up to let much more saline in anyway.  So the plan, as long as Dr. B approves it, is to wait about 10 days, do one more fill, and be DONE!  We see no need to push the limits here.  Volume is good.  Skin is beautiful.  And we want to keep it that way.

We leave 2 weeks from tomorrow for surgery on June 13.  As I said, we are almost there.  Almost.  We'll let you know when we make it.

Stability... and Happy Birthday to ME!

I am now a little over half way through this round.  We return to Chicago in just about 5 weeks, actually.  In  my last post, I emphasized that we are proceeding cautiously, and that has not changed.  There have been a few more minor complications since then, though things appear stable for now.  Stability is good, and we are happy not to push the limits this round.  We just want to make it to the scheduled surgery date.

A few weeks ago, the area of my right stitches began to bleed.  It was strange, and I've never had problems with my sutures in the past (during expansion, generally the sutures are left in).   Mim thought the area may recover if we ditch the stitches, so mom called up Kellie (my amazing dermatology RN at PCH), who graciously invited us down right away for a suture removal in the office.  I handled the procedure like a champ, which is my standard demeanor when it comes to all things nevus these days.  And within a few days, the area was healed and looking great.  We were back on track and able to resume injections.

Then the left side started showing signs of irritation.  Here we go again, mom and dad thought.  Except that, banking on my good behavior for the suture removal with Kellie, they decided to remove my stitches at home!  And they did.  And I was a champ.  Again.

So now both sides are sans sutures, are healed up, and are looking good.  The expanders go back and forth from having a bit of a pinkish/reddish tint to normal, and generally we believe it's from the pressure and friction that results any time I sit, lay, or move around.  So, pretty much, they are always discolored a little.  As long as the color isn't caused by infection, it should hopefully not be a problem.

With all this extra excitement, mom and dad are doing my injections very carefully.  They have yet to fill either expander as much as they could.  That said, the expanders are still filling very nicely.  At this point, the left is at 465cc and the right is at 390cc, and theoretically, there are 5 fills to go.  Each expander is technically 500cc, but they can double their capacity if the skin allows, so even though we will reach 500cc soon on that left one, the injections should still be ongoing for a while.

Check out my bubbles.  Yep, I've got some "back"...

They are looking good indeed.  At this point, I'm not having much trouble sitting down, so my activity is still relatively normal.  I occasionally get some chafing but we have a variety of remedies for that.  So we are happy with where we stand, and pray that things continue to be stable so that I make it to my surgery date of June 13.  Please pray with us that the incisions keep looking good, infection does not develop, and I have no additional complications.  

Oh, and we've had one more bout of excitement since the last post.... I turned THREE!!!  Yup, I had a birthday, and what a birthday it was!  Mom and dad rented a FIRETRUCK for my party.  It was so awesome!  My buddies and I all had the best time.  Take a gander...

BFF and nevus buddy Brayden didn't want to be
in the firetruck pic (above) but he sure
was there and he sure did have fun!

Yes, mom and dad sure do know how to make my birthday memorable!  I was the VIP!!  I got to sit in the driver's seat, ring the siren, light the lights, try on the gear, play with the hoses, and go for a ride.

Everyone had a fantastic time, and I am so excited to be the big 3 now!                                                    

Proceeding with Caution

The first few weeks of this expansion have been interesting.  For now, things are on track.  However, we hit a bump in the road right before we had planned my first injection, 2 1/2 weeks ago. Generally, by day 10 post-op, my incisions should appear to be stable and healed.  My drains can be removed and I can be bathed.  And we can proceed with the injection.   This round, we did not meet these milestones as scheduled.

Mom and dad removed my drains a day early, which was nice.  Unfortunately, at that time, mom noticed that my right incision looked a little unusual.  The left, however, looked just as it should, and was healing nicely.  She talked to Dr. Bauer and watched it a few days.  And, being cautious, they postponed the first injection.  Four days later, when the incision had not yet healed, Dr. Bauer decided I should have a round of Cipro, an extremely hefty antibiotic that is the one and only oral that can target the bacteria I have had issues with (Pseudomonas... oh how we hate to spar with that stuff!).  While it was not ideal for me to take this antibiotic (it is not super-safe for kids of any age and has some very serious risks), Dr. Bauer thought that one week of the stuff would be safe and could really help.  Which it did.

Within about 36 hours, there was a very noticeable improvement in my right incision.  What does this mean?  We don't know for sure, but it seems very likely that the Pseudomonas was preventing the incision from healing, even though it had not yet activated an infection.  After a week, the incision was looking really good.  And today, it is fully healed.  We pray it remains healed and that the Cipro did its job well enough that the bacteria remains at bay for the remainder of my expansion.

The good news is that although we missed my first scheduled injection, we have definitely made up for the missed volume in the two we have done since then.  When we started, we took it easy, but dad was still able to push 60cc into each expander!  And the following week, dad pushed 90cc into my left expander and another 60 into my right.  To put this in perspective, my expanders are each 500cc-sized. So, after only two injections, one of them is HALF full (the left is at 250) and the other trails that just a little (the right is at 210)!  This is excellent progress!  We acknowledge that these numbers are a bit inflated because the missed week, followed by the "easy" week, probably left some extra room for catching up.  We don't expect such great numbers in the next injection, if it proceeds as scheduled.  But we are very happy with the numbers as they are now.

An old pro!  Perfectly happy as dad does my injection.

After the first injection - left at 160cc and right at 150cc

And now... left at 250cc and right at 210cc

Mom and dad continue to watch my incisions very closely, and are treating them with aquaphor on a daily basis.  As long as they remain stable, we will fly back 8 weeks from today to have my expanders removed.  Which means we will hopefully get 8 more injections in as well.  While we are happy with the progress despite a few roadblocks in this round already, we definitely proceed with caution, and don't take the achievements for granted.  Please pray that I remain infection-free and complication-free for the remainder of this round.  Every day, I am another step closer to closing this chapter of my journey.  We are hopeful that will come this year.    

Number Nine was Mighty Fine!

Ahhh, here we are again.  At the top of a 12-week expansion.  Our fifth, to be exact.  The air is filled with impatience, nervousness, and anxiety, as usual.  But it is also filled with delight, amazement, and hope.  I had surgery #9 one week ago, and it went as well as it ever has.

The time leading up to this surgery was a little different than before for two reasons.  First, Dr. Bauer asked us to take an extended break after the last surgery to give my skin and body a little extra time to heal after so many traumas.  So, getting back into the game was a little tougher than usual because we were really enjoying the freedom.

But also, we had no idea what to expect out of this next surgery.  Dr. Bauer had previously talked about finishing up the rest of my bottom one side at a time, because it will be easier on me pain-management wise, and it will heal better.  So, we figured I would have two more rounds of expansion, one expander at a time.  However, to our surprise and delight, I got two expanders. And moreover, I have two 500cc expanders; I have never had this big of an expander in my thighs before!  They are positioned a little differently than they have been in the past, this time being in the back of my thighs.  And they are already filled with 100cc (left) and 90cc (right), so we're off to a good start!  This does not mean Dr. B has changed his mind.  But he will do what he can with the expanded skin in this next removal so that hopefully, we pray, THESE WILL BE MY LAST EXPANDERS!!!  Then I imagine I will go back for one last excision-only surgery.  The thought had not entered our minds that we could finish up this year, but now that is a real possibility.

That said, this is only the beginning.  We don't take one second of this process for granted, as a complication can arise at any time.  Such complications can be simple and easy to overcome, or they can cause a significant delay of expansion, or they can be detrimental to the expanders requiring early removal.  So we take it one day at a time, and are continuously thankful for each step forward that we are able to take.  We should be able to do my first injection this Sunday, as long as the cough I started a few days ago continues to dissipate.

If this expansion goes anything like our trip to Chicago, however, it will be a breeze, and will be over before we know it.  This was, without question, one of our best trips.  It was filled with old and new friends, and lots of love.  We were so blessed to be able to spend time with some other nevus families, two of whom we met for the first time in person.

When we arrived on Tuesday, we met up with the Young family, and got to spend time with baby Andrew, who had just undergone his first nevus and expander removal surgery.  And I'm not surprised to say he pulled through like a champ!

The Young family.
Ok, yes, we forgot to take a picture with them.
So this is from their personal collection.
How could you tell?

We also got to spend TWO days with our very good friends, the Carraro's.  Taelor, who is a real expansion idol, has four expanders in right now and will be having her removal surgery next week.  We pray for awesome results for her.  We had so much fun with them, and they got to show us around the amazing Ronald McDonald house in the city, where they are staying.  We were so impressed by the RMH, and maybe we'll get to stay there someday too.    

Katie and Taelor, on the roof of RMH

Mommy and Taelor's mommy.  Great buds!

And we got to meet the Nolasco family, who came to Dr. B all the way from the Philippines (because, yes, Dr. B is that good)!  My little buddy Wade also just went through his first round of expansion and he is as cute as a button!  I'm so glad we got the chance to spend some time with them.  And his mommy brought us an amazing basket of goodies, which was a wonderful surprise!  We are still enjoying the treats they brought!

Mommy and the Nolasco family

Of course, we always make a trip out to daddy's hometown in the country to spend time with his best buddy and family.  They are such amazing people, and we had a wonderful day together.  And, the Easter bunny brought my sis and I an early surprise to their house!!  Yes, we are loved.

Check out these awesome baskets!
Thank you Kari and Ron, er, I mean,
Peter Cottontail!

So yes, we kept very busy on this trip.  But we were able to do that because I did so amazingly well with my surgery.  In at 6 a.m., surgery at 7:30 a.m., out of the hospital at 2 p.m.!!!  I can't say I was totally happy that day, but I was drinking, eating, taking my meds and asking to go home so we blew that popsicle stand as quickly as we could!  And back at the hotel, I was much happier.  I was managing my pain like a hero, hardly crying at all this time.  And by Saturday evening (two days after surgery), I was back to myself, up and walking and even weaning off my pain meds!!

Sissy walked me up to pre-op for the first time!

Keeping warm while we wait...

So peaceful.  Sleeping off the anesthesia
with my BFF.

Trying to crack a smile while they check my vitals.

And look at me,
smiling away just hours after surgery!

And here they are - my new bubbles!!
500cc expanders in each back thigh.  

Chillin' like the big, brave boy I am while Susan changes my dressings.

Now, as much fun as we were having (I know, it sounds crazy to say that this surgery trip was "fun"), we were happy to come home because it was FREEZING in Chicago!  Even in late March, it was continuing to snow, and at one point, with wind chill, the temperature was NEGATIVE one!  We made the most of it, and we survived the cold temps, but we are glad to be home where we wake up to a comfortable 60 degrees.

Trying to catch a snowflake
as the snow begins to fall...

                                             

Look, the snow is sticking!!
Ok, can I come back inside now?

So, here we are, one week past surgery and three days from pulling my drains and beginning my injections.  We are praying, constantly, that this expansion goes smoothly.  That I get through this round without infection.  That my expanders fill to capacity and maybe even more.  And that we make it to my next surgery date, June 13.  Please pray with us.  We are so very thankful for your support, and all of the love we have received through this process.  It's just that much easier with you by our side.  

Living the Good Life

I know, I know.  It's been a while since I've updated.  Ok, a long while.  Partly, it's because I've enjoyed the blissful ignorance of a surgery-free life, even if only for a little while.  But partly, it's because I've been so busy enjoying myself on this break.

I am now officially 2 years into my nevus-removal.  Two weeks ago marked the 2nd anniversary of my first surgery.  With hope and prayers, I say that I just might be able to complete this process in a little over a year.

We will start up again exactly 10 weeks from today, when we fly back to Chicago. It will pretty much be the same old routine, except that this time, we really have no idea what's in store for surgery.  It may be an expander, or two. It  may be excision.  We are down to dealing with a very small amount of nevus, but also a very delicate area of my body.  And until we return to Highland Park Hospital on March 21, I don't think we'll know exactly what Dr. Bauer has in mind for this next round.

That said, we definitely have let a lot of things take our minds off of nevus removal and surgery.  We have taken advantage of every holiday activity out there, from Halloween fun farms to Christmas Zoo Lights.  We've done our best to celebrate every holiday this season to the max.  We even fit in a trip to Disneyland to boot.  And I have started both gymnastics and swimming lessons. Yes, this has been a wonderful break. And it's not over yet!

I know the photos you got to see in the previous post were not pretty ones.  So now that I am fully healed from this last round, here is the update.  It's looking and feeling great!   These were taken December 14, after healing from round #4 and surgery #8...

I'm not quite there, but darn I'm close.  I am not looking forward to starting up again.  But it has to be done.  And I am a trooper.  A warrior.  A hero.  I will get through it.  Check back in March, as there is more to come...