Where do I even begin! We were in the clinic from 7:45am till 4:00pm. I thought today was going to be simple! I was so wrong! lol
To start they couldn't get a vein to draw blood again.  He's bruised on both arms just from being poked over and over again without any breaks.  We had to go back to finger sticks for a little while.  I feel so bad for him :-(  Then when the blood counts came back everything was really low!! Nolan's hemoglobin was 5.9
ANC is 400 and platelets are 94,000.  No chemo today and he got two units of blood.  I'm hoping he will feel better now.  His hemoglobin has never been that low before. Dr. Aguilera decided to hold his infusion of Avastin and all his oral chemo until his body recovers.  He will have his blood checked again on Tuesday to see if his counts have come up high enough to resume oral chemo and get his infusion.  One thing I've noticed lately is Nolan's hands have been really shaky and his balance has been awful.  After I mentioned it to Dr. Aguilera she did a full neurological exam and said, neurologically he looks good.  It's the thalidomide!  Apparently the thalidomide causes neuropathy and he's developing it in his hands and feet. So she took him off of that for now.  We will see how he does without it and if he improves we know that thalidomide is our problem.  If not we will move the MRI up.

We have a prayer request, Nolan's blood work has been off for the past couple of months and his MCV has been rapidly increasing.  The doctor really can't explain...
She has been running a lot of test but everything has come back negative so far.  We just need to find out whats causing this and how to treat it.  We thought he had a vitamin B12 deficiency but so far all the blood work for that has come back normal.

Nolan had a blast at the clinic though! More candy than you could possibly imagine!! He fell asleep with a whole stash under his blanket's in this picture...lol

Nolan getting his blood drawn by a fairy...lol

The kids with their friend Millan
October 31st 2012

I am so excited to say, Nolan got baptized this past weekend!!! So thankful for this wonderful moment!
  I wish the video wasn't so blurry...

beads of courage and EEG

Nolan proudly wearing his Beads of Courage

  Nolan was excited about starting his 18th Beads of Courage necklace this week!! We feel so blessed to have Beads Of courage to help us through this time.  It's been so therapeutic for Nolan.  Wednesday in the clinic they couldn't find a vein and he had to get poked over and over.  Strangely Nolan remained calm, counting every poke.  Knowing how many beads he was going to get distracted him from what he was having to go through at the moment.  When finished Nolan had three black beads for each time poked and a courage bead for being brave.  He proudly strung them and slipped them around his neck for the picture.

Monday Nolan met with his new Neurologist and we went over everything that has been going on.  Dr. Philbrooks was a little worried about Nolan's bouts of confusion, having a hard time getting words out and sleepiness.( Finally a neurologist that listens!!) He had him in to have an EEG that day.  He called yesterday to give me the results.  They were abnormal but showed no seizure spells.  He wants him to come in to get admitted for a longer EEG. The next one could be 24-72 hours.  Won't know until they have everything set up.  Just be praying for answers.  We really want to get to the bottom of things.  I will let everyone know when we have a date, until then the doctor has upped his Keppra dose.

As far as oncology goes, he has an appointment on October 31st (yes Halloween..lol)
to get labs done and get his infusion of chemo.  If all his blood counts come back good he will start his cycle of cytoxan.

Thank you for keeping up with Nolan :-)

clinic day

Well, today went good but not like we had hoped.  To start Nolan does not have the sonic hedgehog pathway :-(  Dr. Aguilera assured me she's continuing to look for the next best treatment. There is some new and exciting things going on, they are just not open to us yet.  We will continue to remain hopeful, pray and keep fighting.

Nolan's blood count were so, so... They were good, good enough to get chemo but barely.  ANC was 1,000.  If it goes any lower we have to stop chemo and wait for his body to recover.  So no more increases in his chemo right now.  She also saw something in his blood work that might show he's lacking some vitamins.  It started happening after we switched him from pediasure to elecare. Hopefully everything will look better with some supplements ;-)

Such an encouraging verse for this week...
So do not fear, for I am with you;
Do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
Isaiah 41:10

Thank you everyone for all your prayers and support!

Wish Trip

Oh WOW!! What a trip!! We got there late Friday, woke up Saturday and spent all day at Give Kids the World! We ate ice cream, played in the water park and just enjoyed everything. 

Each Wish Child that comes to stay at Give Kids the World gets a star that is placed on the ceiling.  The Castle is just covered in stars!! Here's a picture of Nolan's.

The Kids In Front of the castle of Miracles at Give Kids the World

The Water Park at Give Kids the World

 Sunday we spent all day at Sea World.  Nolan and the kids had such a wonderful time!!

Nolan Feeding the Stingrays 

Nolan LOVED this show!

Nolan with The Sesame Street crew at Sea World

Monday We decided to just hang out at the Nickelodeon Hotel.  There was so much to do there!  We started the day with character breakfast.  Nolan and the kids got to hang out with Spongebob, Squidward, Patrick, Dora and Boots.  After breakfast we spent the day hanging out by the pool and playing in the water park there.

Nolan giving Spongebob a big hug

                                  You tube video of Nolan getting a pie in the face and slimed at Nickelodeon

Nolan after he got slimed

 Monday and Tuesday we spent the day at the Magic Kingdom where we met up with Jack Sparrow and his pirates :-)  We just took our time and enjoyed every minute!!

The Beautiful Castle

You tube video of the boys talking to a trashcan at Disney World

  I will be slowly adding all the picture to Nolan's flickr account.  I've almost got all the Give Kid's the World photo's loaded.  www.flickr.com/photos/pray4nolan

Nolan has an appointment this coming Wednesday for chemo.  Please pray for good blood counts and that everything will go smoothly :-)

Thank you!

Sorry for the lack of updates.  We have just been incredibly busy and Nolan is doing so good :-)
He had clinic yesterday and all his blood counts look wonderful!! So amazing! Thank you so much for keeping him in your prayers!  Still haven't heard back on whether he has the pathway or not, we are hoping to hear something within the next week or so...

Please check out the new Rally Video. Nolan, Jessie Claire, Jacob, Kristen, Tori, Welles, Sarah, Lindsey and so many other Rally children took part in this.  They are just so adorable :-)  They did an amazing job!! For every like, Share or retweet Robert Mondavi Private selection will donate a dollar up to $50,000!! Wow! can you imagine what $50,000 can do for researching childhood cancer??? This is a real easy way to help and spread awareness!!

More Awesome news is Kingdom Kids is making Nolan's wish come true!! We are leaving tomorrow to go to Disney World, Universal and Sea World!!!!  We are so excited!! Nolan has been wanting to go back for so long! Please pray we will have good weather and Nolan will feel super!! I want this to be a trip we will never forget!!  To learn more about kingdom kids you can check out their website:
http://supportkingdomkids.com/home/