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

Because of the Lord's Great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.  Lamentations 3:22-23

I can't describe what has gone through my mind.  All Nolan's symptoms pointed to tumor progression.  I know he had the CT and everything was stable but MRI's can give you such a clear picture. I wasn't going to be at peace until Nolan had one.  I'd rather be safe than sorry.  Because they had to fit him in on such short notice, Nolan had to do the MRI without sedation.  45 minute scan and Nolan was as still as a statue.  I'm so proud of him :-)

Results...Dr. Aguilera wheeled the computer in the room and compared last MRI on May 1st to today's MRI.  There is no way to measure everything perfectly but the tumors were measuring slightly smaller :-) The metronomic chemotherapy is not designed to shrink the tumors over night.  It's a gradual process.  In some cases the tumors shrink and some just remain stable.  We will continue to be thankful for the progress Nolan has made and pray for the tumors to shrink some more!

Thank you for praying for Nolan It's been a rough week but

Dr. Aguilera has given us the go ahead! We are headed to the beach for the Lighthouse reatreat.  We need this time away as a family.  Nolan will get released from the hospital tomorrow morning, we will go home rest up and pack our bags.  woohoo!

Everyday is such a blessing to treasure...

After the wonderful two hours this morning of Nolan laughing, playing and eating we went down to the library to pick out some movies.  Then it happened again...Nolan grabbed his head.  We turned around headed back to the room where he started vomiting again.  I'm so disappointed and no one seems to know whats causing this? Dr. Aguilera and Dr. Venable came in this afternoon to try and figure out the best way to control Nolan's pain.  After a long discussion and assessing Nolan they decided to start him on a low dose of methadone.  As much as I never wanted Nolan on narcotics, I never want to see him in that kind of pain again.  He has been so drugged, he hardly wakes up to talk.  I just want to see my Nolan wake up, happy and doing all the stuff Nolan likes to do.

Thankfully they were able to move us down to Aflac, He is resting comfortably in room 191.  Please continue to pray...

Last night was so awful! Nolan and I were both in tears...He screamed and continuously vomited for at least an hour before finally getting some relief from IV benadryl. All I could think was the worst.

Dr. Aguilera came in this morning and saw how much pain Nolan was in.  She left and came back with a nurse and morphine. Just love and appreciate her so much!  As soon as that kicked in he was all smiles and eating enough to make up for lost time. 

This pic was after morphine this morning

                                               

She discussed the results of Nolan's CT scan he had done yesterday of the brain.  It shows NO shunt malfunction, NO large tumors, NO brain bleeds.  Which is a big relief.  He is NOT cancer free but she is not seeing a connection between Nolan's headaches and "the cancer"  Could be treatment related and they have not ruled out a virus.  Dr. Aguilera is sending Dr. Venable (pain doctor) in to talk to us.  Nolan seen her a while back for his back pain.  Nolan is on daily pain control and has been for years but we might need to change some things.  If Nolan's pain is under control and he is keeping food/water down we should go home this afternoon or tomorrow morning. 

Please continue to pray for no more headaches and guidance for the doctors as the re-arrange Nolan's meds. 

Brittany

Nolan had a blast last night at the Rally Foundation BBQ!  We got there just in time for Nolan to meet them at the finish line.  They rode their bikes from New York to Atlanta, GA raising $38,000 for childhood cancer research!! Wooohooo!!!   Way to go Zack and Luke!!

                                            Zack, Luke, rally kid Lindsey and Nolan

Nolan has been having some problems with headaches the past couple of days.  Sunday night he had really bad head pain with dizziness.  The next day he woke up and was fine until night time then he had another headache with dizziness. Tuesday was great! no headaches!  Then this morning he could hardly get out of bed his head hurt so bad and he was telling me he didn't feel like himself.  So I took him to the ER at Scottish Rite.  They did labs and a CT scan to check his shunt.  Shunt looks good, hemoglobin is low.  So they admitted him for a blood transfusion and observation.  Dr. Aguilera is thinking his headaches and dizziness are a combination of low blood counts and starting alot of new meds at one time.  I hope this is all it is...Please be in prayer that these headaches will go away!!

Thank you so much for checking on Nolan :-)

Brittany

It was a long day at the clinic but a good one.  Nolan very slowly is still continuing to improve.  His hemoglobin was dropping quickly last week and I was almost certain he was going to need blood this week, but I was wrong.  His counts went up on their own.  Nausea continues to come and go but we finally tried the sea band and Nolan loves it!  He wears it all the time and is eating better and feeling better.  

Dr. Aguilera and I discussed when Nolan would have his next MRI and we have decided to wait until August 1st.(unless Nolan gets worse)  I'm not 100% comfortable with this, but Nolan went 3 weeks without any chemo. We have no way of knowing how much the cancer grew in that time. Since this chemo can be a slow process we need to give it some time to work.  We don't want to jump to conclusions because we don't have a lot of options to fall back on.

This month is going to be very busy so there may be very few updates.  Just know I will post if something changes.  We are going on the Lighthouse beach retreat June 18th-23rd.   The kids have been so excited about the Lighthouse trip, they just can't wait.  We had such a good time last year and we can't wait to see what is instore for this year :-)  After we get back from the beach retreat Nolan will go to Camp Sunshine.  I'm so nervous!  I do know that Nolan is looking forward to this and he will be well taken care of. They have a wonderful staff of doctors, nurses, child life specialist and volunteers. He's going to have a blast!

I had to post this picture.  It all started with a ripped bag of gummy worms.  I didn't have anything to put all the gummy worms in so grabbed a puke bag and poured the worms in. It was clean, I promise ;-) Now he likes to do it often to see if anyone notices. He got a lot of stares and laughs! haha! Nolan loves anything that gets attention and seems gross!

Thank you for continuing to support and pray for Nolan

Brittany

What a busy week it's been with graduations and honors day programs, but everyone is officially out of school.  Yippee!!!!  They are all so ready to enjoy the Summer. 

Yesterday we took all the kids to the Brain tumor Foundation for children's fishing event.  They had so much fun even though they didn't catch anything.  Nolan was extremely patient and worked on improving his casting.  Charlie was getting really good at threading the worms on the hooks...ewwwww....lol

Everything is going good.  Nolan seems to be improving a little bit everyday....He's still having some balance problems but it doesn't slow him down any.  The only problem we've had so far is I didn't realize etoposide needed to be refrigerated.  I just noticed the smell from it kept getting stronger and stronger.  It got to the point it would burn my nose and throat despite wearing a mask.  After last night I picked up the bottle and noticed it had stuff floating all in it.  It looked awful! After talking with the on call doctor we decided to stop the etoposide until Monday.  So I will have to make a trip Monday to get more etoposide mixed.  He also has a clinic appointment scheduled for Wednesday with IV chemo to follow.  Please pray for good blood counts.  Nolan's been looking a little pale lately...

Thank you for all the continued prayer and support...

Brittany