Bringing Back the Blog for a PSA!

I can't believe how long it's been since I even visited my blog.  I'm certainly not going to promise anything.  But I felt so strongly about this subject...and if I can help even one person...

As most of you know, my mom and sister are breast cancer survivor rockstars.  When my sister was diagnosed last spring, my doctors went into high gear.  I got a mammogram - it was not my first.  And like all of the others, it was inconclusive due to the density of my breast - common for someone my age.

Therefore, they recommended a baseline MRI.  This process is not fun, especially for someone that is claustrophobic.  I knew it was necessary so I prepared mentally and spiritually and made it through.  I must admit that I was pretty darn proud of myself.  And then I received a phone call...BEFORE I EVEN MADE IT HOME...that I would have to repeat the test.  Apparently these can only be completed during certain times of your menstrual cycle for complete accuracy, and it wasn't my time.  Three days later, I had another MRI - and they told me that I didn't need any more imaging.  Did I mention that I had this completed in July 2011?

A week ago Thursday, I received a random voicemail from my doctor asking about follow up from the MRI.  There was no follow up.  Apparently the radiologist was reviewing files and contacted her office.  For the first time, we both heard that the MRI showed a suspicious cyst in my right breast.

Next thing I know, I suddenly have an appointment with one of the top breast cancer surgeons at Baptist's Breast Cancer Center.  Everything went through my mind!  I have spent a week with this unknown looming over me.  Many people told me that everything would be fine - honestly, probably not the best thing to tell someone...b/c it may not be the case.  It's an awkward situation and many people don't know what to say.  (Hint - if this happens to someone close to you, some of the best words to hear are...I know this must be so scary for you right now.  I will be praying.  Please keep me posted and if you want to talk about it, I am here for you.)

I did want to talk about it.  It was such a relief that I had a sweet friend that came to my house spontaneously on more than one occasion so I could cry or just talk.  She even went through worst case scenarios with me.  It helped.  It helped to prepare mentally for the fight that might be ahead.  Everyone is different, but this was most helpful for me.  This and lots of prayers from other people and my own prayers.

Two days before my appointment, I received more calls from the office.  I was scheduled for yet another diagnostic mammogram and ultrasound before the appointment.

It was a huge relief to find out that yes, there are cysts that show up on everything, but normal and benign.  I was referred to a genetic counselor.  Once that appointment is scheduled, I will be tested for the BRCA gene.  I will be taking my mom with me as well.  We were relieved when my sister was tested last spring and her test was negative.  However, it was explained to me today that mom may carry the gene anyway and it could have skipped my sister.  It's still a scary unknown, and I was told today that regardless of test results, I am in the high risk bracket and always will be.

Today, I'm celebrating the good news!  I'm trying to do anything and everything to encourage all of my family and friends to always go for screening.  It's no fun but seriously - it's just a few minutes out of your life...and it could possibly save your life.  Just cherish every moment - and just for me, make your hugs a little tighter and linger a little bit longer today!

Another Milestone

Today, I turned 36. Instead of feeling depressed and older, I am feeling blessed beyond measure. I have an amazing husband that has completely spoiled me the entire weekend on our little getaway. I woke up to the sweetest card, flowers and birthday cake outside of my hotel room from my BFF. I had a wonderful rendition of Happy Birthday sang to me by my sister and nieces. And my amazing mom and dad are keeping (aka spoiling) Luke for me to have a weekend of R and R with my hubby. I have received so many messages, emails, and phone calls that my heart is overflowing! What a wonderful day!!!

Ups and Downs

L was scheduled for his pre-op appointment when my husband was out of town.  So my mom, who is always there for me, was with me for what I anticipated to be another rough day.  It was actually a breeze.  We did have to go several places, but everyone was so friendly and efficient.  Waits were minimal and a huge shout out to Brenner’s because they were so attentive to L and me.

We were told that L would be one of the first surgeries of the day.  We had planned to stay with my sister the night before so we could be at the hospital at 7AM on June 16.  We live approximately 1.5 hours from the hospital.

Can you believe this?  It was another hot day in North Carolina, and my sister did not have power.  At 7PM, we packed up and went to the hotel adjacent to the hospital.  I can say it was the longest and shortest night since L was born.  He was such a good boy for it to be his first time in a hotel room.  He was fast asleep in his pack-n-play.  I spent the ENTIRE night staring at him.  Oh how I wanted the night to end…to just be over…this feeling of dread.  And on the other hand, I never wanted the night to end…morning brought surgery on my baby’s head.

I prayed all night.  I tried my best to keep those terrible thoughts from creeping into my head.  What if something goes wrong…what if something goes terribly wrong?!?  It was only my faith in God that got me through that night.

I had to wake L up to get to the hospital on time.  No bottle…he had to fast.  He was such a trooper.  I hugged him as tight as possible and showered him with more kisses than you can imagine.  We drove the car to the hospital for one of the most stressful drives of our lives.  It was only five minutes away, and my husband and I were both so nervous that we didn’t know if we could make it without a restroom pit stop.  We made it.  I didn’t even want to take time to go to the restroom.  I wanted as much time as I could have with L before his surgery!

Cranio...what?

Luke was diagnosed with sagittal craniosynostosis.  The bones in a baby’s skull are separated by sutures – when the sutures fuse too early, it causes craniosynostosis.  One of the sutures in L’s head had already fused too early.  This causes an abnormal shape to the head because the skull cannot expand perpendicular to the fused suture.  In L’s case, if you looked down on his head, it was very oblong because it had stopped expanding from side to side.  He also had a very prominent soft spot.  It is crucial to diagnose this as early as possible because if left untreated, it can cause pressure on the brain.

I was the best researcher imaginable over the Memorial Weekend.  We finally heard from our pediatrician that we had an appointment with Duke in mid-July.  That was 1.5 months away – completely unacceptable.  Everything that I had read indicated six months was a cut-off age for a less intrusive surgery. 

Back to work.  I had found my number one choice for the surgery.  Dr. Lisa David from Brenner Children’s Hospital was one of the few doctors that are considered experts at a less intrusive and seemingly very successful surgery involving springs.  I was fearful that I would have the same problem with dates.  I emailed friends and family my top three doctors to find any networking opportunity or connection.

I remember the phone call from my sister. “Dr David?  Dr. Lisa David is your number one choice?” Me – “Yes, do you know someone that knows her?” My sister, “I go to church with Lisa and her husband.”

God works in mysterious ways!  Dr. David spoke with me the next day, and we had an appointment with her the following week.  She was amazingly thorough. Candidates for her surgery are six months and younger.  Luke was six months on May 29.  Once again, miracles and timing…Luke was six weeks early so he was still a candidate.  We had to schedule the surgery for June.  There was no question…God had led us to Dr. David, and we scheduled the surgery for Wednesday, June 16.

Did I happen to mention that Dr. Lisa David is my 2010 Hero of the Year?!?

And Then There Are the Really Bad Days

It was the Thursday before Memorial Day of 2010. It was the day of the “end all, be all” test of determining if something was wrong with L’s head. We had completed the ultrasound and x-rays, and we were so thankful when the test results showed that everything was normal. Doctor after doctor at our pediatrician’s office had always been somewhat concerned with the shape of L’s head. It was an odd shape with a very prominent soft spot. This doctor had seen L when he went in with an ear infection, and recommended the MRI.

L did amazing with the MRI. We did not even need to do any sedation. We were allowed to stand beside of him the entire time, and the lights on the machine seemed to be a great distraction because the patient must be completely still to get a clear image. L did this with one try. One prayer answered.

I tried as hard as possible to read the medical personnel’s facial expression as she viewed the screen during and after the test. Nothing. There was no indication either way. The doctor had asked for a rush on the reading to help ease our mind. We were hoping to get the results before the holiday weekend. Then we received THE phone call on Friday afternoon. It was the doctor. I remember exactly where I was when I got that call. I was in L’s room and had just changed his diaper. S came to my side as I placed the phone on speaker.

I can still hear those dreaded words echoing in my ears. The MRI did show that L had one suture fusing early. The doctor remained positive…it was only one suture, but he did not have the answers that I needed. I wasn’t educated enough to ask the correct questions to even get those answers. I remember feeling nauseous and my knees weakening. I remember the doctor saying, “Don’t let this ruin your long weekend. We have had cases like this before, and the kids were fine. “ I wanted reassurance. I wanted a doctor to say, “Luke is going to be fine,,” but I never heard those words during that phone conversation.

What is the next step?

What – did the doctor just say that my son needs a referral to a neurosurgeon?!? These two words should never be used in the same sentence…your child and neurosurgeon. It was a dark day for me – one of the darkest. Fortunately, the subsequent days brightened.

Giddy Up

It was a beautiful brown horse with a wild, colorful mane. L was plopped onto the saddle and ready to ride. At first there was a little resistance and whining from fear, but then he held on so tightly that his knuckles turned white. The horse began to gallop up and down. There was a mixture of emotions, fear and even a small whimper to get off; however, the pierced lips slowly turned into a smile. This first time on a horse was turning into a success! It was nearing the end of the ride as the horse began to stop. There was even a slight hesitation to dismounting. We patted our newfound friend’s head and said thank you for the adventure. L’s very first ride on the carousel was memorable…at least for me.

In fact, it’s a lot like life. We start this ride with much fear and trepidation. There are certainly ups and downs, and many times we feel as if we are going in circles. We have our tears and laughter along the way. But in the end, it was all worth it, and we never want to end this remarkable ride that we call life.

In 2011, I hope you find your magical horse and enjoy the ride of your life! Hold on tight!!!

Two Small Steps for Man, Two Giant Leaps for L

What an incredibly exciting day!!! I witnessed my son taking two steps on his own! It was the most beautiful two steps that I have ever witnessed. Slow and steady, he pushed off on his dad’s arms and pulled up. With both hands in the air, like walking a tight rope, he balanced himself with a huge smile on his face. Then he wobbled and one foot quickly stretched out in front of the other. Two big steps toward daddy before the plop down! My dad and husband had seen him do this on Thursday, but today was my first day of seeing it with my own eyes!!!

Adding to the excitement, he enjoyed a weekly tradition of eating…drum roll please…Sunday night pizza with mom and dad! I’m not a terrible mom – he had rotisserie chicken and oranges too! We have come a long way from rice cereal! Milestones and memories are being made at warp speed!