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Well, it seems we are going through a rough and weird spell with blood counts...
Nolan had clinic today and his platelets have come up to a beautiful 222,000 but his ANC dropped.
Fortunately he was able to get his infusion of avastin but all oral chemo is on hold until his ANC comes up :-(  This is whats weird, week one all counts are low.  Week 2, ANC and hemoglobin look good but platelets have dropped.  Week 3 Platelets have come up but ANC has dropped?? The doctor can't explain and all she could say was Nolan can't tolerate any increases in his chemo.  He will remain at the steady 25mg everyday as soon as his blood recovers.   Of course with all his blood counts being up and down have caused the very little hair he had to fall out.  He really hasn't said much but I'm trying not to to make a big deal about it...

We need some good news!!! lol
He will have his blood checked again next Wednesday, if everything looks good he can start his cytoxan (chemo).  Thalidomide will be on hold until we decide what to do with that.

Along with prayers for blood counts, please be in prayer for his MRI coming up on December 3rd.  I'm nervous of course! I think they will be doing a bone marrow biopsy while he's sedated, not sure if this is 100% planned yet?  Dr. Aguilera is hoping getting a biopsy of his bone marrow will answer a lot of questionable stuff they have had with Nolan's blood work.

Thank you for your support and prayers!!

 I'm so sorry! I forgot to post how clinic went yesterday! lol
Really there isn't much to say....
Nolan's ANC and Hemoglobin are recovering and coming back up but now his platelets have dropped really low.  So, that means no chemo right now and they took him off of his celebrex (part of his chemo protocol).  He has an appointment to go back in on the 14th to have his blood re-checked.  We are hopeful BUT he had a bad nose bleed tonight.  If he has anymore we may need to get his blood checked earlier to make sure he doesn't need platelets.  We really are unsure of what caused this whole drop in blood counts, but his doctor is suspicious it may have been that small increase in his cytoxan (chemo).

Prayer request:
~Blood counts to recover
~MRI December 3rd

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!