Better Day

I got a lot of comments on Nolan's t-shirt :-) There is an awesome story behind that t-shirt and I wanted to share the link...   http://knowhispeace.com/testimony.php

Today was so much better!! Nolan was as still as a statue and felt well enough to go to karate this afternoon.  11 more days! We are hoping he should be done by January 1st!

First Day

Well, we are just a little exhausted...lol! Long day!
Good news is, not only did they approve Nolan's new chemo but it was delivered and ready for us when we got to the clinic today.  WOW! Nolan's not supposed to start this until January!!! We are all set :-)

Bad news....He must start the dreaded decadron! The most hated steroid EVER! The worry is radiation causes swelling and Nolan doesn't have much room in his spine for this to happen. If we don't stay ahead of everything it could cause a lot of problems.  Expect a cranky, hungry, swollen Nolan...

Radiation was long, but hopefully today will be the only day like this.  There were a lot of mistakes and apparently they accidentally cancelled Nolan's appointment.  We figured this out after waiting for 2 1/2 hours... I was not prepared for this.  Tomorrow I will make sure I have lots of activities and snacks just in case. Nolan pretty much walked in and hopped up on the machine like he was a pro, telling everyone he's done this before and he knew what he was doing. Ha! That's Nolan for you! Even though we had to wait a long time everything went well, one treatment down 12 more to go!  Woooohoooo!!!

Prayers

I had to share this picture!! The kids at the Cure Childhood Cancer Christmas party! Really shows some personality ;-)

Nolan is still doing good and we are prepared for the next step. For those who haven't heard, Everolimus was approved for Nolan :-) Such a huge weight lifted off my shoulders!

Radiation will start Wednesday.  The major symptoms to expect are fatigue, nausea, severe sore throat and maybe a slight drop in blood counts. Please pray for as little symptoms as possible.  Hopefully we will know a little more Wednesday about his dosage and how many days of radiation he needs.

Thank you everyone that has reached out to us, supported us and prayed for us!
We feel so blessed

I had to share this song with everyone.  I've probably listened to it a thousand times this past week  It has really prepared my heart and given me peace about what is to come.  Can't wait till the CD comes out!

"I know who goes before me

I know who stands behind

The God of angel armies

Is always on my side

The one who reigns forever

He is a Friend of mine

The God of angel armies

Is always by my side"

radiation simulation and mask fitting

It was a very long and emotional day. We talked to Dr. Aguilera about all the risks and benefits of EVERYTHING! We are walking a fine line with Nolan.  When you've had someone on as many regimens as Nolan and continues to relapse, you are left with very few options.  Dr. Aguilera is basically making up everything as she goes.  We will not do nothing but we are not being super aggressive either.  We are trying to stay right in the middle, so Nolan can be Nolan and he can enjoy all the things Nolan loves to do.  

We met with Dr. Natia this afternoon, signed the papers and went ahead and did his radiation simulation and mask fitting.  We don't have an exact number of how many days Nolan will be doing radiation, but right now she is saying 3-4 weeks.  He will go every day Monday through Friday.  It will be a long month and I dread the drives to Atlanta every day, but I know we will get through this.

So Here's the plan...

Radiation starts Wednesday and will go everyday Monday through Friday

As soon as radiation is completed he will start his new chemo.  This is not all written in stone yet but he will get weekly carboplatin infusions and bi-weekly avastin infusions.  Along with this he will take an experimental drug called Everolimus.  Nolan would be the first Patient with Medulloblastoma to take everolimus here in Atlanta.  So there is good and bad to that.  It could work and it could not? We have no idea.  The other thing is, Dr. Aguilera said it's going to be hard to convince the insurance company since there is not much documentation about this drug on kids Nolan's age and with his type of tumors.  Please just pray for guidance as we research all these chemo meds and that we would find what is best for Nolan.  

This is Nolan getting fitted for his radiation mask.  (He will wear this for every treatment.)
They bolt the mask down to the table to ensure that Nolan won't move.

Another picture of the simulation being done

Sorry if I missed anything or it sounds like I'm rambling.  I'm super tired! lol
Thank you for all the support and prayers right now!

MRI results

See how good Nolan looks in this picture?  He has been doing so good and he's so happy, I couldn't imagine getting anything but good news on his MRI. I was wrong...
His tumors are growing.  The one in the spine is the one we are most worried about.  There isn't much more room and if it continues to grow Nolan will loose the use of his arms and his ability to breathe on his own. So this is the plan...Tomorrow we meet with Dr. Aguilera (Nolan's neuro oncologist) to go over plans, then we meet with Dr. Natia (Nolan's radiation oncologist).  If all goes as planned he will start radiation Monday.  He will only get radiation to the tumor sites and he will go every day for several weeks.  When that is done he will do an experimental chemo protocol that has not been done on any medulloblastoma patients.  This will require weekly infusions in the clinic and at home chemo.

We are completely devastated and heartbroken. I just want to freeze time....
This verse keeps going over and over in my head. It has really helped me cope during this time.

I have told you these things, so that in me you may have peace.  In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Please continue to keep Nolan in your prayers.

The kids with their Thanksgiving feast they did in the back yard.

Just wanted to wish everyone a Happy Thanksgiving and thank everyone for all your prayers and support throughout the past three years!! It means so much to us to have wonderful family and friends!

Nolan is doing AWESOME!!! He had his blood checked Tuesday and his platelets dropped but his ANC came back up.  Thankfully everything was in a good range to start his 5th cycle of chemo.  Nolan's next clinic appointment will be on November 28th to have his chemo infusion.  Please continue to pray for stable blood counts and for his MRI on December 3rd.

In everything give thanks; for this is the will of God in Christ Jesus for you
1 Thessalonians 5:18

Oh, give thanks to the Lord, for he is good! For his mercy endures forever.
1 Chronicles 16:34

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