A Big Scare

It has been a long, difficult, and exhausting past 24 hours.  It all started last week, when mommy noticed that my head was growing really well.  She called the doctor to see if this is normal growth, or a sign of danger, but it wasn't so drastic that we had to worry at that point.  That same day, I started a simple cold... nothing out of the ordinary... until last night.  Mid-evening yesterday, I began to get a sick tummy and was throwing up.  After that started, mommy noticed that my eyes looked funny and my pupils were not the same size.  She already knew from research that this could be related to a neurological dysfunction, and that got both her and daddy a little worried.  My tummy continued to make me sick, and one of the worst complications of NCM came to their minds -- hydrocephalus (fluid on the brain).  This is one symptom of NCM that mommy and daddy are on constant watch for, so they are very familiar with the indications, and these were three big ones.

My auntie came over to stay with big sis, and we rushed off to the children's hospital.  One good thing is that they get you in right away when it's something so concerning.  We saw several nurses, and finally the doctor came in.  It was hard to tell what she thought, but she wouldn't let mommy feed me in case it turned out that I needed emergency surgery.  That certainly didn't make anyone feel better.

An hour or so after getting there, I got my first (and hopefully last) CT scan. Dad took this picture of me going in, and I swear I was a better sport than it looks like!  It only took a few minutes and it wasn't as scary as it sounds.

The Lord was watching over me, because the CT was normal, and I do not have hydrocephalus.  What a relief for everyone!

Still, however, my pupils continued to change and fluctuate from symmetrical to unequal.  Doctor after doctor came in to check me out, and no one really  had an answer for us.  The ER contacted the on-call neurologist, and the opinion we were left with was that I probably have a viral infection causing the sick tummy and funky eyes.  Mom and dad didn't like that answer so much, but that's what they stuck with.

This morning, mommy called and got me an emergency appointment with my own neurologist.  And before we got there, she spoke with my pediatrician and my dermatologist.  Interestingly, all three of them agreed with the hospital -- it's likely a viral infection.  That seems a bit strange to us, but if so many medical professionals agree, it gives us the littlest bit of relief.  Mom and dad are supposed to keep an eye on me for the next week, and hopefully it will all go away.

So, we are very thankful that this doesn't seem to be a complication of my NCM.  However, needless to say, we will continue to hope and pray for this to correct itself, and quickly.  We would certainly appreciate anyone joining us in this effort.

It's Getting Close!

We are less than two months from my first surgery ... 8 weeks from today to be exact.  The hospital has already called to pre-register me, and mom has already received the forms for my pre-op physical.  My vaccinations are all up-to-date, which I had to receive early to accommodate my surgery schedule.  I will get my last two shots tomorrow and one month from tomorrow, and then I'll be ready! 

Today I saw an opthamologist, at my neurologist's request.  It was just supposed to be a baseline examination, and for the most part, it was.  He dilated my eyes and looked inside them.  Overall, he considered it a "normal" examination, but he did find some pigment at the optic nerve inside one of my eyes.  He said it's common and has no medical significance, so there's nothing to worry about.  He just told mom to bring me back in 2 years, and he'll keep an eye on my eyes probably annually from there.

We are also only about 3 weeks away from my appointments in San Fransisco.  Mom and dad are really looking forward to that and hopefully confirmation that my NCM is somewhat insignificant.  I am continuing to develop wonderfully, so that is a good sign.  Mom is writing this with a sad heart, however, keeping in mind that another young boy named Ryan, from Australia, recently died from complications of his NCM.  We are sending prayers to him and his family.

On another note, our cookbook fundraiser has been a great success.  There are few books left, and mom doesn't have any of them in hand.  Our church has been instrumental in helping us sell them, and has even received many donations from the tremendously generous congregation.  The church has around 50 or so books left, and then we will be out!  Mom hasn't decided yet whether she will order more, but she will keep everyone posted.  She says that if she does, it will be after surgery.  So, if anyone missed out, let us know right away and mom can grab the books from the church.  I'm so glad that everyone loves my book.  That really helps make the project worthwhile.

The Books are In!

We are pleased to announce that Cooking It Forward, our fundraising cookbook, is in and available for purchase one month ahead of schedule!  If you would like your book shipped to you, please order off of this website using the "Buy Now" button on the right side of this page.  If you live in the Central Phoenix or East Valley area, mommy is willing to make delivery arrangements.  Please email us at joshua@journeyswithjoshua.com to place your order. If you are ordering a large quantity to be shipped, please email us to arrange bulk shipping INSTEAD of purchasing through this website.  Thank you all for your support and generosity, and for helping me to receive the medical treatment I so greatly need.  God bless.

Some Early Arrivals

How lucky!  We received notice of two early arrivals this past week.  First, the MRI disc we sent to Nevus Outreach, Inc. has already been reviewed by Dr. Barkovich, a world-renowned pediatric neuro-radiologist at UCSF who is known for detecting Neurocutaneous Melanocytosis in MRI results.  Mommy received his report on Friday afternoon, and she was very pleased when she read it.  Dr. Barkovich did NOT find any spots on my brain or spine other than what the local doctors found.  He did note that my spine has some asymmetry towards the bottom, so mom and dad will need to discuss that with my neurologists, but they are very relieved that this expert agrees I only have one small spot of melanosis on my brain.

Additionally, mommy received a shipping notice from her cookbook publisher ... the books are going to be available nearly a month ahead of schedule!  She is due to receive them this coming Tuesday.  We are all very excited to see the books and begin sharing them with the many people who supported this project and have been waiting for them. 

So, over the next couple of months, we will be busy with cookbook sales and getting ready for the 5 medical trips we will complete by about this time next year.  Our first upcoming trip is at the end of November, when we will travel to San Fransisco to see a neurologist and dermatologist who are known to be experts on the subject of NCM.  Then, at the end of December, my surgeries will begin.  We are anxiously awaiting these dates, and looking forward to getting past them.

Lots of Good News!

Where do I start?  Well, the neurologist we saw a couple of days ago did just what he said he would do: he reviewed my MRI scans with the radiologist, and he did some research about NCM.  Then he called mommy with the good news -- he is not worried about me at all.  The particular melanosis that I have on my brain is not expected to grow or develop in any way.  It should stay just where it is, which is in a place that doesn't interfere with anything.  He is no longer worried about seizures, and doesn't think I need another MRI (unless, of course, symptoms do develop).  So, just as our dermatologist said, although I have a spot, and technically have NCM, it should not affect me.  He does want mommy to take me to an opthamologist to have my optic nerve looked at, of all things! But whatever, we'll just tack that on to the number of specialists I need to see.

Now, mommy - being the hyper-control freak thoroughness queen, and daddy - wanting some reassurance, still plan to take me to San Fransisco to see the specialists out there.  It is so nice that my neurologist here is willing to learn about NCM along my journey, but my parents want to hear my prognosis from someone with direct experience.  So we're still hitting Frisco, which is a-ok because we can hopefully make a pit stop at the Ghiradelli ice cream parlor.

And that leads me to the next bit of good news.  The UCSF neurologist's office called mommy and let her know that the doctor has appointments available on the same day as the dermatologist with whom mommy already made an appointment.  Unfortunately, they won't actually book me until they get my local doctor's referral and my medical records, but they should have that next week and hopefully we'll be able to snatch up an appointment on the day we want.  That means I'll get to go before my surgeries!

Now, I mentioned a few days ago that mommy signed me up for a program where professionsals would keep track of me and make sure my development is on schedule.  Well I got to meet my case worker and physical therapist today, and they were both very happy with my development.  Even rating me on the 4-month grid (and I won't be 4 months old for another 16 days), I scored great.  So, we're off to a good start.

And there's yet one more piece of good news this week -- mommy finished my book!!!  She has been working day and night for weeks on end, and it's finally ready to go to the publisher.  So keep a watch -- they should be available in about 2 months.

NCM 101

I had my first appointment with the pediatric neurologist today. He was super nice, spent a lot of time with us, and is wonderfully experienced in neurology, EXCEPT on the subject of Neurocutaneous Melanocytosis.  So, when I call this post NCM 101, I mean to say that my parents did most of the "teaching" with the little bit that they learned at the medical conference last month.  The doctor is definitely a keeper, nonetheless.  Right away, he is going to sit down with the radiologists and make sure he knows what they saw on my brain and why they say it is a melanosis.  He is also going to research and educate himself about NCM, and will be calling mommy and daddy with answers to the numerous questions they presented to him. 

That being said, we did learn a little at the appointment -- some good, and some not so good.  First to the good news... he does not believe the spot I have will cause any risk of hydrocephalus.  This is one of the biggest concerns of NCM, so I am grateful for that.  He also does not believe that the risk of developmental delay is very high.  That's another plus.  But on to the not so good... unfortunately, mommy and daddy will have to watch me very closely because there is a chance the spot could cause seizures.  They would likely be "staring spell" seizures, and the doctor is not sure of how great the risk of seizure is for me.  Hopefully he will know more after he chats with the radiologist and learns more about my spot.  The other "not so good" that came up is that he thinks I may need to have more MRIs, and soon.  I'm not so sure about this, and we'll be checking around thoroughly before I go under again. 

We'll definitely be having a regular relationship with this doctor, but to get us started off right, mommy and daddy have decided to take me to see some NCM specialists in San Fransisco.  The word on the street is that there is a dermatology-neurology-radiology trio at UCSF that are the who's who on the subject of congenital melanocytic nevi and NCM.  And of course, my parents want nothing but the best for me.  So a-travelin' we will go.  It is going to be tricky trying to coordinate appointments with all of the doctors so I'm not sure how quickly we'll be able to make it, especially since we have to plan around my surgeries and expansions.  But mom got the ball rolling today and already has an appointment with the dermatologist for me just after Thanksgiving.  If the stars align, the neurologist will be available that day too.  If not, we may not get to go until after my second surgery, which is scheduled at the end of March, 2011.   

All in all, I'm doing great and am totally on track.  Mom's bringing out the big guns though and enlisted a government program to make sure I stay that way.  It's wonderful because it's free, and they will also help me with physical therapy when I am going through my surgeries.  I get to meet my case worker and physical therapist on Friday and I'll let you know how it goes. 

   

The MRI

It is August 5, 2010... my three month birthday!  Mommy woke me up at 3:30 a.m., but it had nothing to do with this.  It was time to eat, and it would be the last time I could eat until after my MRI later in the morning.  Around 6 a.m., she woke me up again, got me dressed, and we headed to the children's hospital.  Two hours later, the nurses took me to my destination.  They put me to sleep with a little mask filled with a gas anesthesia, and I handled it very well.  I was out for about two hours and when I woke up, I felt pretty good.  I was STARVING though!  Had myself a nice breakfast and went back to sleep.

Ok, that was the easy part.  Waiting was the hard part.  We are so very lucky to have a doctor that really cares about me, and she went out of her way to get the results to mommy and daddy before the written report comes out tomorrow.  So here are the results... the radiologist found one spot on my brain.  According to the doctor, it is "very small and very faint," and it is in or on the amygdala.

What does this mean?  Well, first and foremost, I suppose it means I have Neurocutaneous Melanocytosis (NCM).  That is what they call it when the kind of pigment and/or cells that form(s) a nevus end up on the brain or spine.  While this can be very serious, I am still very fortunate because it appears that what I have is the asymptomatic version of NCM.  The doctor said the spot is not pressing on anything or blocking anything, and because of this and its location, I should never develop symptoms or have any problems.  I will need to see a neurologist to verify this prognosis, but we've already had a second opinion from our surgeon in Chicago, and he agrees that we should not worry about this spot.

All in all, this is good news. Our wonderful doctor is working hard to find us a neurologist who knows about NCM, and to get us an appointment right away.  So, while this is not the result we were all hoping for, it is the next best.  Thank you to everyone who sent happy thoughts and prayers.  I am so lucky to have all of this love in my life.