Finally feel like we are back in the swing of things! Nolan was able to get his IV chemo today and everything went well.  Shouldn't have to go back for another two weeks :-) At least from the oncology stand point.  We still have a GI and Audiology appointment next week.

Dr. Aguilera called me yesterday with Nolan's endocrinology test results.  Everything looked good except his thyroid.  Basically it isn't functioning normally anymore.  This is more than likely a results of Nolan's radiation he had 2 1/2 years ago. Now that we know, Nolan can get started on medication and hopefully get to feeling better soon.

Rylea and Nolan playing Jenga in the clinic today

changes

So far, so good!  Can't believe we were able to make it to the clinic by 8am, considering how bad the traffic is/was in Atlanta...lol :-)  Nolan's blood counts are beautiful!  ANC is 2,000 right where it needs to be.  Platelets are 238,000 and hemoglobin is 12.9! Woohooooo! Go Nolan!  well, that's the good news.  Bad news is Nolan's electrolytes were a little messed up again and he was dehydrated.  Dr. Aguilera and I talked about it and decided it's best to give Nolan's a couple more day for his stomach to heal.  He will get IV chemo Friday, but will start oral chemo tonight at a 50% reduced rate.  It's just obvious Nolan is getting more chemo than his body will tolerate and for this to be effective we need consistency. Hopefully the reduced rate will give his body the rest it needs for Nolan to build back his strength. Everything else looks good Dr. Aguilera is re-checking his IgG levels and cortisol levels.(We should get these results this week.)  As far as today goes Nolan is getting fluids and once done they will re-check his blood levels and see if they are back to normal.  GI has recommended Nolan go back on the really hypoallergenic EleCare feeds at night and some pedialyte during the day to keep him hydrated. We hope this will be easier on his stomach and he will be able to gain some weight back...

Exciting news is Nolan will start 3rd grade Monday.  He can't wait to see his friends and he is looking forward to another wonderful year at Crescent.  Dr. Aguilera is working with us on this, if his ANC drops too much we will just give his immune system a boost with some neupogen shots.  We have a a whole team of people looking after him and everyone at school knows and loves hims :-)

Thank you for all the support and prayers!

Nolan is slowly improving.  We were really hoping he would be able to resume all of his chemo today.  His hemoglobin was 12.2 and his platelets were 225,000.  Which are AWESOME, but his ANC was 960.  It really needs to be above 1,000.  They went back and forth about about whether to start but Nolan hasn't ate or drank in 10 days and he is still not tolerating any feeds.  Basically he's been living off of pedialyte that runs through his g-tube.  Of course this has caused his weight to drop and the strong antibiotics he's been on has really caused a lot of stomach problems.  Dr. McDonald said if we were to start chemo right now, is like asking for another hospital admission...  Nolan has a follow up Wednesday with Dr. Aguilera.  We are hoping his blood counts and everything else will be better by then, if not we will have to come up with another plan.

Thank you for keeping us in your prayers,

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