Wonderful day at the clinic! Tuesday is always chick-fil-a day :-)  Thank you chick-fil-a and cure childhood cancer for always providing such tasty food for all the cancer patients and their families!


Nolan's lookin good and feelin great!! I love seeing him off chemo! Nolan's blood counts are almost completely recovered.  His hemoglobin is 12, platelets 140,000 and ANC 850.  We would really love to see his ANC above 1,000.  He goes back to clinic on Friday to have counts re-checked and hopefully get IV chemo and resume oral chemo.

Thank you for all the continued prayers and support!

HOME!

Sorry, It took so long to update.  Nolan was discharged from the hospital yesterday! Woohoo!! He is at home and feeling so much better!  He' s still off some of his chemo meds and its wonderful to see him smiling and having the energy to play.  He didn't take one single nap today!?!? He's in pretty good spirits! The only thing he's been slightly disappointed about lately is his hair falling out again :-(  Nolan's never really cared but for some reason he's really wanting a mo-hawk...lol! 

It will probably come back.  We've gone through the process 2 1/2 years now of his hair coming in, falling out, coming in, falling out, coming in, falling out.......I think he's cute either way :-)

Nolan has a clinic appointment on Tuesday to see if his blood counts have  recovered enough to start chemo again and to see how he's continuing to recovering. 

Thank you everyone that prayed for him, encouraged us or came to visit!! :-)

      I woke up to this sweet smiling face this morning.  After sleeping about 24 hours he just woke up...lol!  Like I said, Nolan likes to sleep through sickness. Its just how he copes and it's his body's way of healing itself.  He's not 100% yet...He's still not eating but we are so thankful he's not vomiting. If Nolan's keeps up this good trend then we should be able to go home in the morning.  We will just have to slowly build back his feeds and his eating.  It's a slow process...I've learned not to rush Nolan into food.  It just ends up being a disaster.

 Here's a picture of Nolan catching up on his beads of courage :-)

We had to get Nolan out some.  He had been in bed since Tuesday so he was a little bit wobbly but enjoyed walking down to the koi pond and getting some fresh air.  I'm just enjoying seeing that smile again :-)

It looks like Nolan hit a little bump in the road to recovery.  Last night was terrible and this morning has not been better...

Nolan's not eating anything and he's not tolerating his g-tube feeds.  There is a slight worry that the antibiotics are causing his stomach problems and vomiting.  They are talking about switching one of his antibiotics to something that might be a little easier on his stomach.  Despite being on IV fluids His electrolytes are off, which is probably caused by all the vomiting.  They switched those out in hopes this will help too.

In the meantime we just wait for things to improve.  Nolan's sleeping around the clock.  He tends to do that when he's not feeling good and  I know it's good for him.  Hopefully the rest, fluids and antibiotics will get him to feeling better.  

From what I've heard his blood counts are looking better hemoglobin is 11 and platelets are 66,000.  I didn't hear his exact ANC but I was told it's improving.  So thankful his body is recovering from everything.  We discussed the reduction in chemo a little today.  I haven't talked to Dr. Aguilera yet but I know she's going to agree.  Nolan can't tolerate this dosage he's on or he's just going to end up in the hospital every month and that's not what we want.

Please pray for guidance as the doctors rearrange all Nolan's meds, for his stomach to feel better and his continued blood count recovery.

Thank you,

Brittany

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!