He's done!

Last day of the year and Nolan's last day of radiation.  What a crazy coincidence! :-)

It feels good to do something and complete it.  Nolan's been on chemo without a break or end in sight for almost 2 years now.  It's nice to do something and finish it, but we are prepared for more ongoing chemo.  Besides the strange symptoms Nolan had right before Christmas, he has done wonderful with radiation!  The other night he came bursting through the bathroom door pretending to fly around the house like superman,  He stopped and picked up my fruit bowl and held it over his head and said, "I'm feeling so strong."  He can be so funny sometimes and I'm glad he's feeling superman strong right now :-)

 I  just wanted to take the time to say thank you to all our wonderful prayers warriors for all the support and wonderful messages throughout the years!  We will go into the new year with much HOPE and anticipation for what God has in store for us! Happy New Year Everyone!!

Nolan checking in for his last day of radiation

Nolan with Greg on his last day of radiation 12/31/2012

I had to include this picture! This was Nolan with Greg 3 years ago (December 2009) We were lucky to have the same wonderful radiation therapist both times :-) 

2 more days!!!!

Nolan giving his thumbs up! All is good :-)


The day of the 23rd Nolan had a lot of strange neurological things go on that still can't be explained.  All I know is, it is much better.  When going into this we were informed because of the area's they are radiating he could loose some vision and more hearing.  I am seeing a little vision problems but not much.  There is a chance once they are done it will improve.  Right now all the tissue around the tumors are getting swollen and inflamed from the radiation which can cause some disturbing and uncomfortable symptoms and that is where the decadron comes in.  After talking with the doctors we decided to try and leave Nolan's decadron dose alone since he only has 2 more days.  He should finish up on the 31st then we will meet with Dr. Aguilera on January 2nd and sign all the papers to start chemo. I think Nolan might even be able to start chemo that day.  He's having some awesome counts right now (ANC 7,700, hemoglobin 10.5 and platelets are 150,000, so amazing!) We are looking at another MRI in 4-6 weeks.

Thank you everyone for all the prayers and support!! We had such a wonderful Christmas :-) There were so many people that made it extra special.  We are so truly blessed to have such wonderful friends and family!

Prayer Requests

Nolan came up to me this afternoon and said, Mom I need to start lifting weights!

I was a little shocked but laughed and answered him with, why?

Nolan replied, Because my arms are all floppy and weird feeling. Then he goes on to tell me his head feels weird too.  My heart just sank for a moment... He doesn't seem to have any pain but I'm guessing he must have a tingling feeling as if his arms are sleeping.  I do think this is probably due to swelling in his spine from the radiation and it might be that his decadron dose needs to be increased :-(

Please say a prayer that these symptoms will go away...

Merry Christmas everyone!

7 more to go!

Nolan is doing AWESOME!  6 radiation treatments down, 7 to go!

Nolan had clinic yesterday and all his blood counts look good.  There may have been a slight decrease but not much.  Dr. Aguilera said, she can see noticeable differences in Nolan.  She seems to think his balance looks better and his speech has improved.  Maybe, just, maybe...

Nolan is not really showing much symptoms of radiation.  He seemed a little nauseous this morning but quickly got over it. Lately he's been like the little energizer bunny :-)  He never stops going and he actually has a hard time getting to sleep at night.  So different then a couple of months ago when he was practically sleeping around the clock.  We were trying benadryl to get him to sleep but Dr. Aguilera told me to try some melatonin.  I like that this is a little more natural and she had to throw in the fact it has anti-tumor properties in it and some clinics are using it in combo with chemo. hmmmm....quick trip to GNC and bought some! lol
So far he's used it for two nights with success! :-)

The plan is radiation until Saturday, then he will get a Christmas break of Sunday, Monday and Tuesday.
It will be a nice break but we must report back for more the day after Christmas...

Nolan with his shark "Ned" given to him by a wonderful foundation called Radiation Vacation.
I love the sharks name! Ned stand for No Evidence of disease :-)

Thank you everyone for all your love, prayers and support!!

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.