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 :-)

I just wanted to give a short update on how Nolan is doing.  Besides vomiting all day everyday he is doing wonderful!  We are currently trying a kytril patch so that he gets a constant slow dose of nausea medicine in him.  Pray that this will be helpful...

Exciting news! We are headed to the beach tomorrow :-)  Nolan has been talking about the beach since December.  Go back six months early December we got the horrible news of Nolan's 3rd relapse.  The doctor's were so discouraging and I wondered if he would make it to Christmas, to see his 10th birthday and get his chance to go to the beach this summer and here we are.  I can't tell you how thankful I am! Every day is such a blessing!



Let your unfailing love surround us, Lord, for our hope is in you alone.  Psalms 33:22