As of yesterday, Jacob has been on Lapatinib (Tykerb) for a month now. His dose was increased on November 15 and his labs have looked great for the last four weeks. However…

Last week, Jacob started to complain about numbness in his abdomen area, some other random pains in his leg and feet and left hand cramping and weakness. We made a trip to Orlando on Monday to see Jacob's oncologist team at Arnold Palmer. Jacob's pediatric neuro oncologist, Dr. Smith, believes the numbness in Jacob's abdomen is not from the new drug, but rather from a large, 5 cm schwannoma in his lower spine area. I’m sad that this slow growing tumor is now causing Jacob discomfort, but relieved that he can continue on the Lapatiniband we can hold on to hope in this new treatment (numbness in the hands and feet is a common side effect from Tykerb). Dr. Smith offered Jacob the option to start a drug called Neurontin to see if it would control the numbness or to wait and see if anything changes. Jacob chose to wait. He isn't having pain in the area and doesn't want to add more drugs to his current cocktail. He answered the way I would have, so I was happy about that. I think he feels better knowing that his organs are working as they should and he isn't in any immediate danger.

Jacob did well on his neuro physical exam. He’s showing weakness in his left hand, but it doesn't appear to be any worse than it was right after surgery. I’ve been in contact with Dr. A and Jacob's OT and we have plans in motion for more aggressive hand therapy and another hand splint. We were also informed that scar tissue could be forming from his August surgery, causing changes in his left hand. Need prayers for Jacob's left (and only working) hand.
Jacob has a wicked rash from the Lapatinib on his face, chest and back. We have a prescription for it and have put it in to be filled at our compound pharmacy. Hoping it will give Jacob some relief from that.

For now Jacob will continue with weekly labs and continue to pray for no new negative changes and stable results in January at NIH.

Thank you all for your continued prayers and support.

As most of you know our family took Gavin to Disney World's Magic Kingdom recently.  I didn't blog about it because it would be a book! and well we've been busy with other things :) We all had a great time and Gavin loved it so much. 

I do want to share a descriptive essay that Brie and TD wrote together.  It isn't the final project because TD had his hands in this draft a little too much, but all the ideas were Brie's and all of the initial descriptions.  TD just added the small details.  I really enjoyed it and wanted to share it on our blog.

Happy Reading!!

Brie

November 6, 2012

Period 2

 

Crowds of People Couldn’t Take the Magic Away!

 

Arriving at the Magic Kingdom Monorail station at Disney World in Orlando, Florida, I felt the rush of the past 3 months of excitement come over me!  Walking down the ramp to the green gates of Magic Kingdom with my family was a blur, with all of us staring in awe at the fall decorations, waiting for the gates to open.  We arrived around 7:40, leaving us 10 minutes of agonizing wait before the Magic Kingdom Opening Ceremony at 7:50.  It was chilly, windy and overcast because Hurricane Sandy was out in the Atlantic Ocean, so there weren’t nearly as many people at the opening gates as I thought there would be.  Or maybe we just arrived first and had front row seats, so I just didn’t notice.  Either way, the train brought the characters for the opening and the next 10 minutes went by like the blink of an eye. 

And then it happened.  The gates opened.  Once the park opened and all the people rushed through the gates like cattle, my stress level went through the roof!  We hadn’t really made a plan, but Heather, my stepdad’s cousin’s wife, explained that we needed to go to the kid rides first, so off we went to ride Peter Pan and It’s A Small World in the very back section called Fantasyland.  We were able to get on both without waiting at all.  The ride wait clock said “5 minutes,” but I think was just because it took 5 minutes to walk to the front of the ride!  Although the Fantasyland section started filling up, Magic Kingdom was big enough that the people that rushed through the gates were spread out and the morning seemed like we could do anything we wanted without a wait!

As the day went on, however, the crowds of people grew rapidly.  Walking down Main Street around noon, back towards the gates to meet the Disney Princesses in the Theater, people rushed in like waves crashing against the buildings around us.  I get nervous in such large crowds, especially with trying to keep up with my family and make sure my baby brother was ok, so I tried focusing on other things to alleviate some of my anxieties. I was able to relax a little and I began taking in a whole new side of Disney, one that the eye just couldn’t capture.  The assorted smells tickled at my nose.  The candy shops smelled of savory candy apples and bitter dark chocolate bars topped with innumerable concoctions of caramel, chocolate and other goodies.  The concession stands smelled of greasy hot dogs and fries.  The restaurants smelled more of gourmet food, but equally delicious!  There were terrible smells as well.  As we were all bunched together, some people thought it was a good day to not wear deodorant.  The stench singed my nostril hairs, making them into little stubbles.  Different noises beat at my eardrums, too.  The mix of foreign languages was muffled, but loud enough to hear sounds like gibberish.  It was all enough to cause a headache!  Each corner I turned there was a young child with glossy eyes and puffy eyelids; tears staining their angelic faces.  The blood circulation on my finger was slowing down as my baby brother Gavin tightened his grip around my finger.  

I found myself back in reality, shuffling through the crowds of people, feeling again as if we were cattle being rounded up, standing, or more like pushing, shoulder-to-shoulder, touching each other.  As it grew later in the day, the crowds grew in every direction, left, right, up and down.  We managed to watch several shows, fighting off people who insisted on encroaching on our personal space!  Even with such people, the Dream Along With Mickey show at Cinderella’s Castle and the Celebrate a Dream Come True parade that we watched in Frontierland were simply magical!  

The darkness finally arrived.  Normally I love nighttime, but I was dreading the fact that the millions of other people, or so it seemed, were probably not going to do much better in the dark!  Waiting for food, getting pushed and pulled in many directions at once, having to tell an old woman to please remove her shoe from my butt, all of these things could have put a damper on any other event I’ve been to.  But not the Main Street Electrical Parade, and certainly not the Wishes Nighttime Spectacular!  Floats covered in lights, designed to make scenes from movies like Alice in Wonderland and Peter Pan were amazing.  The Cheshire Cat even made an appearance, disappearing and reappearing in vibrant pinks and purples.  Cinderella’s Castle was a bright and shiny monument against a pitch black landscape, changing from violet to pistachio green to fuchsia pink and peacock blue.  Light up balloons and bubbles from the bubble guns filled the air around us just as Tinkerbell, wrapped in lights, flew out of the castle spire.  This was the moment we had been waiting for the entire day!  Our faces lit up, just as the sky did, as the most amazing fireworks that can ever be seen made this moment seem so… magical!  Not so surprising given that we were at the most magical place on earth!

The post-parade crowds, shoving and stepping could have affected my mood, but I didn’t even notice.  No one did.  We were in such awe from the efforts of Disney to create such a wonderful place that it didn’t matter.  It didn’t even register in my memories!  And although every single soccer mom in the park rammed me in the ankles with her bulky, devilish stroller on the way out, they could not take away the magic that Magic Kingdom shared with us!

I updated my running blog today, www.Runningforlemonade.wordpress.com .  This week was a great week in my running world.  I posted pictures and a race recap. I am sharing my paragraph about Jacob on here also.....

In other good news, Jacob, who I mentioned above, is handling his new chemotherapy drug well. Jacob has Neurofibromatosis Type 2 and he’s battling brain and spinal tumors. He’s been on Lapatinib for two weeks. This is the third chemo drug we’ve tried in 18 months. Jacob is having weekly labs to make sure his body is continuing to function normally while on the drug. For the last two weeks his labs have returned normal. This is awesome news!!! The initial side effects only lasted a few days. We just upped his dose last night, so I’m expecting a few bad days ahead, but hoping they won’t be too bad. One more step to having him on the full dose is good news too! I’m always a fan of progress.

Happy Weekend!!

I keep pushing "I can see clearly now" into the musical spot in my brain, attempting to keep the negative out!  It's gonna be a bright sunshiney day!!

It's almost Friday again (well, now it IS Friday) and I’m way overdue for providing a Jacob update.  The past several weeks have been extremely hectic.  We've had both the fun and the not so fun.  I’d planned to write this post this morning, after a nice long run while TD was at Donuts for Dad with Gavin, enjoying a few minutes of quiet.  But… I was pulled over this morning for speeding, 46 in a 35 (not true!), and the officer was very ugly to me.  I was treated like a criminal and it really hurt my feelings.  I wish they would put more effort into finding the criminals who broke into our van and robbed me of my purse and camera!  So, I’m trying to de-stress from that right now, but didn't want to put off writing an update any longer.

The reasons I haven't gotten around to an update are mostly positive ones!  When Jacob and I returned home from Orlando, TD and I left the next day for a weekend in Apalachicola for my first half marathon and to celebrate our anniversary.  The kids stayed in Tallahassee with their grandparents and had a great time.  When we got home from being at the coast, we took our first family trip to Magic Kingdom and Islands of Adventure.  Both weekends were awesome and exhausting!  Totally worth it though.

Enough intro.  As of today, Jacob is feeling better.  It's been three weeks since his last oncology clinic appointment in Orlando where he also had an MRI, heart echo and heart EKG.  His heart tests returned with great results.  Heart looks healthy.   For you medical types, shortening fraction and ejection fraction, which are the things we are most concerned with, are normal :).  Echocardiograms often pick up trivial valvular flow issues.  His showed trivial tricuspid regurgitation which is not clinically significant.  He has normal jet velocity (or flow) from that valve. We will continue to follow the echo to watch the SF and EF.  The MRI results were as to be expected.  According to the Arnold Palmer radiologist, Jacob's MRI showed growth in many of his tumors.  They were comparing it to November 2011 and they really didn't tell me anything I didn't already know.  They did labs and detailed neuro and physical exams.  Everything checked out for him to start Lapatinib, so we left with a script and an appointment for a month from then. 

Getting the drug was not as easy.  It took two weeks to get it , along with a lot of frustration, but we succeeded and he started it on Tuesday, October 30.  It has to be taken on an empty stomach, so we are adjusting back to the 5:30 am wake up to make sure he can still eat before school.  750 mg twice a day is the full dose that most NF2 patients on Lapatinib are taking, but because it can be very harsh for the liver, heart and stomach, Jacob was started on 500 mg twice a day.  The first few days Jacob was very tired and didn't feel well.  He stayed home from school last Thursday and had a bad stomach ache Friday night.  Since then, though, he seems to be feeling normal.  We had a great weekend and he is back at the school grind this week. Tuesday, Jacob had labs to see how his body is responding to the new medication and everything checked out.  He will continue on.  He will go weekly for labs to check his immune system and liver functions.  At the end of the month we will return to Arnold Palmer for another EKG and clinic.  At that time, I believe they will increase his dose.  I really want him on the full dose as soon as it is safe for him.  We really need something to stop his tumors!! 

Speaking of school, report cards came out and both kids have some new goals for this 9 weeks.  I met with Jacob's teacher, changed his schedule a little bit and hope he will be more successful this time around.  He seems to be working harder this week.  Appreciating the little things!

We did get some really great news this week from Jacob's physical therapist, Amy.  She said Jacob has regained almost all of his previous range of motion in his neck.  She said his balance is a bit better and the scar area seems less tight.  Progress!

We also got our NIH dates - January 7th - 11th. 

And the NF2 battle continues.

Thank you for reading. 

Running for the Bay

I finally had a chance to write about TD and my sixth wedding anniversary and my first official half marathon. If you're interested in reading about check it out here...

http://runningforlemonade.wordpress.com/2012/11/06/running-for-the-bay-and-sixth-wedding-anniversary/