Brayden and his family stopped by see Nolan today :-)  Also had coach Kenny come by and spend some time building lego's with Nolan.  I really appreciate that, because I am not the best at lego's but Nolan's LOVES them.

Well, I do believe today has been a little better.  Other than Nolan not eating and he is now throwing up... :-(  Strangely this always seems to happen when he comes in the hospital?  I asked him if he felt sick and the only thing he told me was he felt nervous.  Which has me worried, What is he nervous about? Being sick? Being in the hospital? Nolan's never been nervous about being in the hospital.  He thinks of everyone  at Scottish Rite as his family/friends.  Maybe he's getting older and is able to comprehend more...I'm just not sure.  I'm going to see if Molly (child life specialist) can come in and talk to him tomorrow.  Hopefully talking will help.  Molly is so good at what she does :-)

Nolan's oxygen has been alot better after the blood transfusion.  So thankful for this good news :-)

His g-tube site still looks awful!  He's on two antibiotics in hopes to clear up any infections that could be going on. His ANC is still low but is coming up.  Hoping and praying for better numbers tomorrow.  As his ANC goes up his g-tube site will start to look better and his body should be able to fight off anything else.

thank you for all your continued prayers!

Unfortunately Nolan did not get to feeling better :-(

He has a lot of stuff going on at one time and the hospital is really the best place for him to be right now...

I'm still waiting on some test results but his g-tube site doesn't look good.  It's a little infected...

His oxygen has continued to drop in between breathing treatments.(He's currently on 2 liters of oxygen around the clock.) He has a possibility of an infection going on somewhere in his body and He's also having a lot of stomach problems.

One good praise is his chest x-ray looked good!

I don't always give those a lot of credit because all Nolan's chest x-rays have looked great in the past. It was the CT scan's with contrast that picked up on his infections, but I'll take a little good news ;-)

Another thing to add is all his counts are low.  He's getting two units of blood and he has to temporarily stop chemo in hopes his ANC will go back up.  I was shocked that his hemoglobin was 6 today and he just got blood a week ago?  I don't think this is right...We need to figure out why Nolan's counts keep dropping so often.  

The pulmonologist wants to wait and see how the blood perks Nolan up.  Since hemoglobin helps supply your bodies oxygen, They are hoping his oxygen will look better tomorrow.  If things aren't looking better he might order a CT scan of Nolan's chest and another sleep study.

Thank you everyone for your continued prayers and support!

well, things have been going smoothly until Nolan woke up Friday morning with a dry croupy cough :-( More than likely a common cold, but with Nolan's weak lungs and his low immune system it can cause a big problem.  So all this has led to low oxygen... Thankfully Nolan was recently approved for a therapy vest,and we are using the vest along with his breathing treatments.  Nolan has been responding pretty well to these treatments and I thought he was doing better today.  He went ahead to physical therapy and karate but by this afternoon he was as white as a ghost.  I checked his oxygen and he was 82% and his temp was ranging from 99.4 - 100.  Just barely under needing to go to the ER.  He did better after his treatment but was in bed by 7pm and is on 1 liter of oxygen :-(

Here's a video we took of Nolan's vest right after we got it. It's kind of funny! He was pretending to be a monkey...lol

Here's a video of the kids on a recent trip to their great grandmothers house.  They made this awesome slip and slide on a hill :-) Nolan was very wise and decided not to try...lol!

Nolan feeding the fish with his great-granddad :-)

The kids on a recent trip to Cave Springs

Nolan had a wonderful day at the clinic! Blood counts were awesome! Hemoglobin 12, ANC 1200 and platelets 121,00!  He was able to get his chemo infusion and start cycle #2 etoposide...woohoo!!!

Thank you for praying :-)

Nolan also started his 16th beads of courage necklace this week and he wanted everyone to see them.  So I posted some pictures.  To learn more about beads of courage you can check out their website:

www.beadsofcourage.org

Nolan with his neuro oncologist Dr. Aguilera

Nolan with his Beads of Courage.  He's so proud ;-)

Nolan and Charlie 

 Well, no cycle 2 yet...

We are going up to Atlanta tomorrow because Nolan's hemoglobin is low.  Also his ANC is only 200.  So we had to stop all chemo until it comes up.  Preferably above 1,000.  Hopefully Nolan getting the blood transfusion tomorrow will perk him up a bit so he can enjoy the 4th of July :-)  He will go back to clinic on Friday to get blood counts re-checked and a chemo infusion.  Please pray for good ANC :-)

Happy early 4th of July everyone!

busy, busy, busy!!

Nolan had the best time at Camp Sunshine! I really didn't think he would stay all week considering how tired he's been lately but he proved me wrong, as always!  When I went to pick him up he was surrounded by people and had this look on his face like he'd be ok if he stayed or went home...lol

Saturday Cure Childhood Cancer had a picnic at Six Flags. So we braved the heat and went. We pretty much stayed in the water park or on the water rides.  The kids had a blast!!   Six Flags has been raising money for Cure Childhood Cancer and Children's Healthcare of Atlanta.  As of Saturday they have raised $16,000.  Way to go Six Flags!  

Tomorrow morning I go to get Nolan's blood counts checked to see if he's ok to start cycle 2.  He's been on chemo 42 days straight now.  Everyone has told me how wonderful the metronomic chemotherapy has been.  We haven't seen that yet.  Nolan has just had a lot of side effects and has had a rough time adjusting.  I can say the past two days have been better.  Basically I was told he needs time to adjust to all these new medications.  I'm starting to see signs of Nolan feeling better and it's such a relief.  Today is the first day he's gone without a nap :-) Thank you for all the prayers!  Here's some picture of the past week...

The kids on thunder river at six flags

Charlie coming of the slide at six flags.

Simon trying to stay cool!

Luke playing in the water

Yum!  Nolan loves icecream :-)

Nolan saying Hi to taz and tweety

Nolan giving tweety a hug.  Had no idea how much he loved characters until Saturday!  He had to give them all hugs and he didn't want to let go of Daffy...lol

Simon, Charlie and tweety

Nolan at Camp Sunshine getting his shirt signed by a UGA football player.

The smile says he had another amazing week at camp sunshine!
I'm so proud of my little camper!

Lighthouse Retreat #4 Santa Rosa Beach, Florida

         What an Incredible week we had at the lighthouse retreat!  To learn more about the lighthouse retreat check out their website:                                            http://www.lighthousefamilyretreat.org/

     Nolan had to get a chemo infusion before going to Florida  So we took the whole crew up to Atlanta, played a quick game of hedbandz and off we went... (they worked pretty quickly when they saw all the kids....lol)

 This would be one of our favorites.  The lighthouse retreat flash mob :-)  

     They couldn't wait to run out to the beach.

                                   

Nolan with Mitchell McGhee on Italian night

Silly Luke

                                                     

Charlie enjoying some beach time :-)

Charlie running through the water

Simon building a sand castle

                                                         

  Luke jumping the waves  

                                                     

 Simon, Kenzie, Kenzi, Rylea and Julia
New Friends :-)

Charlie's wiped out after a long day at the beach and pool

                                                                 

 Breakfast, the most important meal of the day...lol 

                                             

Simon, What more can I say?

                                                     

Nolan having fun in the pool with Buck Barber & his grandson Andrew 

                               

Mitchel McGhee dancing with two princesses

                                               

                                       

                                                                     
                                           Girl's hula hooping video's

                                       

                                     

                                           

                                              

Nolan, Simon, Charlie and Luke's talent was throwing pies :-)
Scot Ward was their victim...lol

                                                 

Nolan on the last day of the lighthouse retreat 

                                             

"Morning Watch" nothing quite like singing praises on the beach

                               

   Nolan exhausted, was carried back. The volunteers were just incredible.   If they saw a need, they filled it.  They made sure we had the best time.  We left feeling refreshed and our spirits renewed.  I have to share this.  The first night home I go to tuck Nolan in bed and I notice he has tears in his eyes.  I lean over to ask him whats wrong?  He says, "I want Jesus in my heart!" Wow!  (Nolan and I have been talking about this for a year now, but he hasn't been ready..)  I went on to ask him if he wanted to talk to someone at church the next day and he replied, "NO, I want to pray now!"  So we prayed, both of us were in tears, tears of joy.  So different from the tears of pain a week ago.  Thank you, thank you Everyone for all your unceasing prayers!


 If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved.  For it is with your heart that you believe and are justified, and it is with your mouth that you profess your faith and are saved.  Romans 10:9-10