This week has been a rough one for Nolan....
Since Saturday he's been having horrible headaches.  We want to celebrate him having  a good MRI and everything going well but why the horrible headaches? He had clinic today and they went ahead and did blood cultures and gave him some IV rocephin just in case he has a sinus infection.  I was almost positive he needed blood,  but Nolan's blood counts were incredible! His hemoglobin was 13, the highest we've seen in a long time! His platelet's were about 215,000 and his ANC was wonderful too!  Anyway, counts did not explain his problems.
He couldn't get avastin (IV chemo) because protein in his urine is too high
again :-(
Here we go with another 24 hour urine test....
Nolan did seem to perk up by the time we got home and was able to get karate in but soon after  he was in pain again.  The pain seems to come and go and sometimes he has vomiting with it but not always.  (I'm thinking the lortab might be what's causing the vomiting.) The medical staff does not seem all that concerned?
Please be in prayer that we can find out what's going on.

final results of the MRI

We have good things and bad things happening again.  For about 2 weeks Nolan has been falling a lot and having a lot of problems with his arms and legs shaking without his control.   Everything pointed to problems with tumors.  I don't know why I haven't mentioned it until now.  I guess a part of me was worried and I didn't want everyone else to be worried.  Today Nolan went in for labs and for Dr. Aguilera to go over the final results with me.  I do believe everyone is really surprised on how well Nolan responded to radiation.  Everything looks so much better and we expect it to continue to improve.  So why these weird problems?  We think his spinal cord is swelling from the radiation :-(
He will start back on decadron (steroid to reduce swelling) tomorrow...
Yeah, we are disappointed but it's so hard to see him this way and we don't want this to be permanent.
This means a flip flop in his medicine schedule because everolimus and decadron don't mix well.  We are really hoping that the decadron won't mess with his everolimus levels.  I don't know if I have ever mentioned before but they test his blood about once a month to keep an eye on the level of everolimus Nolan has in his body.  There is supposed to be a gradual increase and a good majority of the time patients have a hard time reaching good enough levels to be effective. The good news about Nolan's everolimus is his levels shot right up without any problems :-)  We are excited about this!!
Oh and his blood counts look wonderful!!!!!!!!!!!!!!!!!!!!!!!

Prayer request are for these symptoms to go away and for Nolan to maintain a good everolimus level.

Thank you all!

MRI preliminary results

Nolan with his radiation oncologist Dr. Natia

Well, I have some good news!! Everything is still preliminary, the doctors will look over all the scans and compare them to the last one but everything has improved.  The main tumor that we were most concerned about (the one that was located in his upper spine) has shrunk by approximately 50% and there was three small tumors in his brain that looked stable or improved.  Dr. Natia's said, she is very pleased and the radiation will continue to work over months to continue to shrink the tumors.  I can't tell you how relieved we all are.  I still need to talk to Dr. Aguilera, Nolan did a research study on diffusion of the spine.  We are all hoping that this will be beneficial in seeing things that are normally hard to see on MRI's, Dr. Aguilera is also hoping that it will help her in being able to define what is scar tissue, tumor and what is radiation changes.  Thank you so much for praying so hard for my little boy!
I will update as soon as I have more details.

MRI tomorrow, please pray!

This week has been filled with appointments.  Yesterday was ENT and pulminology, today is  oncology and chemo infusion, tomorrow is MRI and meeting with radiation oncologist.

To start with yesterday's news...
Hearing test showed more hearing loss.  We think it's enough that he needs his 
hearing aids adjusted. It's disappointing but not the end of the world.  
Pulmonology went wonderful!!! 
His lung function test went 
from 85% to 110%.  He has two good, strong lungs! :-)  
We are weaning him off the inhaled steroids and 
he still is off all oxygen.

Today's news...
Blood counts look better! We are a little suspicious that the 
bactrim is causing some problems 
with his counts. Definitely are going to keep an eye on that.  
He was able to get his avastin (IV chemo) and 
he will start oral chemo tonight.

Tomorrow...
MRI early in the morning! Yes, we are nervous, but we know he is in God's hands. 
 Please pray for Nolan tomorrow and for all of us. 
 This is a really big day and deciding factor in his treatments.
I will post the results as soon as I know on his facebook page.
https://www.facebook.com/CapsForACureNolanBlake
The facebook page has been helpful in informing everyone with short, quick updates.
 Nolan has also loved seeing all he messages and likes.
He updated his status the other day with "I like it" for those who saw and wondered? lol
He just wanted everyone to know how much he enjoyes seeing all the post and encouraging messages! I will still update the blog, it just takes a while to have time to sit down and write ;-)
Thank you all for your love, support and prayers!!!

When I am afraid, I will trust in you.
Psalms 56:3

I can't even describe the past two weeks.  There have been a lot of "ups" and "downs"

I guess to start it off Charlie broke both elbows and both arms are in long arm cast, He ended up having to have surgery on one elbow followed by flu the next day :-(
Poor guy has had a rough almost 2 weeks.  Please be in prayer that his elbows will heal, he won't have any problems and that he will have a speedy recovery from not only the elbows but the flu.
Everyone had the flu shot at our house BUT that doesn't always mean you are fully protected.  Sometimes I wonder if it's worth the risk of getting the shot?  Thankfully the ER gave Charlie a prescription for tamiflu and one for Nolan to help Prevent Nolan from catching it.  It could be awful if Nolan got it....

For the good news :-)
Since coming off the dapsone Nolan has been able to sleep with NO oxygen.  This is just a miracle!!  I had to go back through the caringbridge and find out when Nolan started taking this medication and it was September 2011!!! He's been taking something that he is allergic to for that long!  Within 6 weeks of starting the dapsone in 2011 Nolan started having oxygen problems.  He's been through many CT scans with contrast, lung function test, vest therapy and so much more and no one has been able to tell us whats wrong with him until now.  It just makes me sick to my stomach.  Since this effects your hemoglobin could this be part of his problems he's been having with his blood for so long?  A lot of his numbers on his CBC are starting to level out and look better.  I am so thankful for finding this problem but so heartbroken Nolan had to go through so much before we found out what was wrong...

All Nolan's blood counts look AWESOME! His urine test came back normal :-) and he was able to resume his Avastin (chemo) yesterday.  MRI is in two weeks! Please pray we will see some tumor shrinkage...

Nolan with his 10th birthday cake!