back to school

Sorry it's been so long since I've updated.  We have been so busy enjoying our last days of summer!

The kid's went back to school last week and are loving it :-)

Right now Nolan will go two days a week and we will just increase the days as he is able to tolerate.  

Medically Nolan is doing good.  The only problem we still have is his vomiting....

We have tried every vomiting med you can think of and nothing works.  It might help but it doesn't stop it completely.  He has lost about 5 lbs in the past few months so the doctor switched him to a high calorie pediasure and hopefully we can get him to keep it down.  If not we will have to replace his g-tube with a GJ tube to bypass the stomach.  Nolan is not happy about that :-(  Just be in prayer that he will gain weight and the vomiting will slow down.  

Nolan had clinic yesterday and he was able to get his IVIG and IV chemo without any problems.  Next big thing is his MRI on August 30th. His doctor is out of town so we probably won't get results until after Labor Day but I will let every know as soon as I can.

Thank you for keeping Nolan in your prayers!!

Brittany 

Nolan is doing wonderful :-)  He had clinic today and so far everything has gone smoothly!  All his labs look good but his 24 hour urine protein was elevated.  That just means his chemo will be pushed back another week to allow his kidney's a rest.  He was able to get his IVIG and have some fun time with the therapy dogs :-)

Please pray for Nolan's buddy...

Brayden's MRI showed tumor progression and he will probably be starting radiation soon.   

Thank you!

Brittany

I'm so sorry I haven't updated in a while but Nolan has been doing AWESOME! 

He has been sick for so long that seeing this turnaround in him has been an answer to prayers! 

He has energy now, he's happy, talkative and just has that sparkle in his eyes again.  We don't know if it's because we reduced his everolimus (chemo) a little or if it is the IV IG infusions.  We just know we are thankful and we are really enjoying this wonderful time with him :-)

He starts Temodar (oral chemo) Sunday and will go into clinic next Wednesday for Avastin (IV Chemo) and another IV IG infusion.  Please pray that everything will go smoothly and Nolan will continue feeling so good.  

Thank you for continuing to pray for Nolan!

Brittany

This hospital stay has been a hard one for Nolan but we have had so many amazing people come to visit and cheer Nolan up!!  We got the call from Nolan's doctor yesterday that he couldn't attend camp :-( Nolan cried himself to sleep last night and it was horribly heartbreaking for me to watch...

To make matters worse he can not attend camp sunshine in the hospital. He is in a regular room on precaution/isolation so he isn't allowed to leave the room to attend.  We have had many camp sunshine visitors coming to bring Nolan activities plus some camp sunshine gear to make him feel like he is at camp.  

Today camp sunshine brought a special visitor! SPONGEBOB! Spongebob wasn't allowed in the room and Nolan couldn't leave the room but they talked and waved to each other from afar.  It was so sweet to see his smile again! 

Nolan is doing great! He's off oxygen and he's tolerating his g-tube feeds. He got his first infusion of IV IG yesterday without any problems and today he will get caught up on his chemo. If everything goes well we should go home tomorrow!! :-)

Brittany 

For those who don't know Nolan is back in the hospital :-(

He started getting a wheezy sounding cough last week and then he started running a low grade fever. When we got to the ER last night he was needing 3 liters of oxygen... So they did chest x-rays and confirmed he has pneumonia. They have him on IV antibiotic, breathing treatments every four hours and oxygen.  He seems to be responding well and we have been able to wean him down to 1 liter of oxygen. The sad news is he's missing camp sunshine :-( but Dr. Mazewski said she doesn't know why he couldn't go mid week if he continues to improve. If it doesn't work out they are doing "camp sunshine 2 u" in the hospital Monday through Thursday :-)  I'm so thankful for all these programs that bring cheer and good times to these kids that are going through so much!

Thank you for continuing to pray for Nolan!

Brittany 

good days

Nolan had a good check up despite everything going on. Thing's we have noticed lately is Nolan's posture has changed, he has a harder time walking and he has difficulty swallowing without throwing up.  We believe all this is related to the radiation he had to his upper cervical spine.  It's so disappointing to see all these things happen to his body but he seems so content and happy to just sit on the couch.  All Nolan's blood count's look great but we have been noticing Nolan getting infections on his skin, around his g-tube and the sinus infection...So Dr. Aguilera checked his IG levels and they were really low.  The remedy for this is IVIG and he will start getting those infusions sometime in July.  Hopefully that will give Nolan's immune system a boost.  He will also go in to the clinic tomorrow to get his everolimus and cortisol levels checked to see if these can be behind his fatigue and vomiting.  Please continue to keep Nolan in your prayers.  He wants to stay well and be able to go to camp sunshine at the end of this month :-)

Nolan has also come up with the idea to sell "slime green"  Rally for Nolan t-shirts.  He is so excited about this and for those that don't know "slime green" is his favorite color ;-)  All money raised will go to researching cure's for Medulloblastoma.

http://rallyfoundation.org/donate/tshirt/7343/rally_for_nolan_t-shirt

Brittany 

I can't even describe the week we had.  We were loved, cared for and left with our spirits feeling renewed.  Thank you to everyone who made sure we had an amazing week! I know it takes alot of work but we really appreciate everything!  Here's is the pictures from the week....
http://www.flickr.com/photos/pray4nolan  Enjoy :-)

This coming week Nolan has a neurology and a clinic/chemo appointment.  I'm hoping to go over nausea meds again because he is still struggling with vomiting :-(  The patch works a little but the part I'm worried about is whether Nolan is keeping his meds down.  So please be in prayer for good nausea control and good blood counts.  If anyone has tips or idea's on nausea control please leave me a note ;-)

Thank you :-)