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.

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

Photo Card

Stitched Memories Christmas

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Photo Card

Stitched Memories Christmas

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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!