update

I was able to talk to the neurosurgeon and the plan we came up with today was to add caffeine to Nolan's diet to help with pain control and put a binder around his stomach to help control the CSF flow. Binder placed and IV caffeine was given but not a big change. I would say the caffeine gave him the want to get up and move around but when he got up all he wanted to do was lay back down..ugh! poor guy! I really don't know if the binder is helping or not?

Dr. Aguilera came in to talk to me this afternoon and she told me we are basically just masking the problem. Everything keeps coming back to the shunt. She is e-mailing Dr. Reisner (Nolan's neurosurgeon) and hoping he can come up with a plan. It's back and forth, back and forth. Nolan is just a mystery right now and I'm still praying for some answers!

I hope everyone had a wonderful Easter!

Brittany

scan results

Nolan is still feeling horrible...
Very lethargic, headaches when he sits up and vomiting.
MRI was done early this morning and Dr. Aguilera just came in and read the results to me. All the tumors are stable. I would love to hear the word clear one day but stable is awesome right now!
Nolan has a pretty severe sinus infection but that would not be why he's having these symptoms. According to the MRI he has a small fluid collection near the ventricular catheter of his shunt and his ventricles are still slightly enlarged. That means Dr. Aguilera is going to have Dr. Brahma (neuro surgeon) come in and examine Nolan and talk to me. As far as swelling in the brain Dr. Aguilera said she didn't see much and is not thinking it's a steroid issue but it can't be completely ruled out. The plan now is talk to neuro surgery and start antibiotics.

Thank you for all the continued prayers and support!

Brittany

back in the hospital :-(

Nolan's headaches started getting worse and this time they are accompanied by vomiting...
He has been re admitted in the hospital and will have an MRI of the brain tomorrow.

Please, please pray for good results!

I will update tomorrow as soon I know something.

Thank you!
Brittany

a smile

I would say about mid morning Nolan was able to sit up for about 15 minutes and go through his mail.  He's been laying down since but he is showing little steps to improvement.   He is not complaining of pain as much just that his head feels a little funny on the right side.  I know this is the 2nd update of the day but I had to share the good news!

Thank you for all the Prayers!!

home

I was shocked and surprised when I was told yesterday that Nolan would be going home. He was still very lethargic and still in pain. I went and talked to Dr. Aguilera about Nolan's steroid schedule before they released him to make sure that this medicine would kick in quickly and give him the relief he needed. I was very uneasy about him going home and the nurse had to give him loratab to get him from the bed to his wheelchair :-( By the time we got home he was in horrible pain but it was to early to give him anymore pain meds. I helped him get a nice warm bath and got him to bed hoping that he would wake up tomorrow feeling all better. Didn't happen....
He woke with a horrible headache and started vomiting. After talking to Aflac we have decided to go up on some of his pain meds and if anything gets worse he will have to go to the clinic or the ER. Apparently it can take 24 to 48 hours for the steroids to kick in :-( I really don't mean to sound down on the steroids, I know a lot of people have commented about being on them. They are just causing a lot of health problems for him and it interferes with the experimental and hopeful chemo he is on. Please be in prayer that this pain will go away. It's so horrible to watch your child be in pain and know there isn't anything you can do to fix it. I'm ready to see his smile again

Brittany

update from shunt test

Nolan passed the shunt test and did wonderful! Which is good but they are still sounding iffy and want to continue to observe him. Dr. Reisner said, Nolan's ventricles are slightly enlarged but not dangerously enlarged and his shunt is a little slow at draining but it's still draining normally.
Dr. Aguilera came in to talk to me this afternoon and talked about possibly putting Nolan back on steroids :-( I knew this was coming....
She believes he probably is still having some swelling from the radiation and the steroids could calm some of that down. We are just going to have to slowly figure all this out.

As far as how Nolan is doing, he's been sleeping mostly. He seems ok if he's laying down, if he sits up the pain comes back. So he prefers sleeping right now. Dr. Aguilera ordered a bunch of blood work to rule out low counts or infection and all that came back perfect!!

Brittany

the plan

Nolan seemed a little better yesterday afternoon. I'm sure the good pain meds helped...
This morning they woke him up at about 6:30 to take him to CT and his pain was pretty bad :-(
So here's the results...
The scan is somewhat stable but still on the fence. I'm not sure how many people understand whats going on so I will try to explain a little. Because Nolan has had brain and spinal tumors along with brain surgeries he has a lot of scarring. This has led to Nolan's body not being able to drain his spinal fluid like a normal person. In 2009 he had his first shunt put in it's pretty visible when he doesn't have much hair. The biggest part is implanted in his head and a drain goes down his neck and to his stomach. If this stops functioning for any reason it can cause an increase in pressure in the brain and a lot of headaches. We are still unsure if this is the issue so they have decided to do a special test either today or tomorrow. They will inject a dye in the valve that's in his head and let it drain down. While its draining they will take a bunch of images. Hopefully this will rule out any shunt problems. Nolan will not be sedated for this test. He's a pretty brave boy and is not usually bothered by these kind of test but I will comfort him with a chance to pick out a cool courage bead once he's done.
The doctor talked like if this is not shunt related this could possibly be something new Nolan is going to have to deal with...
I know migraines are fairly common and there are ways of controlling them so I pray that we are able to find what works for Nolan. I will try to update as soon as I find out something.

Thank you for praying for Nolan!
Brittany

#pray4nolan

Nolan's pain has just continued to increase with each day and I ended up taking him to the ER this morning.
They did a CT scan and a series of x-rays to check his shunt and it appears the ventricles in his brain are a little larger and there is some collection of fluid. I'm not completely understanding....
He was admitted to room 134 at Scottish Rite. The plan right now is pain control and observation. They will probably continue to scan him to see if his ventricles are remaining stable or getting larger. We would really like to avoid surgery if possible but we do need to find out what's causing the pain and figure out how to make him feel better.

Thank you so much for all the prayers and support!!

Brittany

continue to pray

Nolan's pain today was really bad! Nolan is on several different medications for pain but he is still having pain in the 3-5 range (on a scale from 1-10) Still he made it to karate and he is still refusing to go to the ER. Have I ever mentioned Nolan has a high tolerance to pain??? I still didn't feel very comfortable not talking to a doctor, so I made that call to the on call doctor at Aflac. We adjusted one of his med's and are hoping for a better tomorrow. If the pain doesn't seem better we will have to make that dreaded trip to the ER ....

Please continue to pray for no more pain!!

I believe this picture was one of the few smiles we saw today when his Peaches Neet Feet's were delivered!! He's been looking forward to these shoe's!! :-)

headaches are back :-(

Clinic went really good Wednesday. Nolan's counts looked fantastic and his blood pressure is back to normal. The bad thing is Nolan's headaches are back...
After discussing them with Dr. Aguilera she believes it's the decadron withdrawal. It's awful but he has to come off! He's on several different pain medication but he's still having breakthrough pain throughout the day. I just hate to see him in so much pain...
He's still determined these headaches are not going to get in his way. He has plans to be at karate graduation tomorrow and he will be going back to school Monday for the first time in about 4 1/2 months. He's like the energizer bunny! he never slows down and he never gives up!
He has such a wonderful attitude!
Please be in prayer that these horrible headaches will go away!

I know it's been too long...

Nolan is doing better with each day and was able to get some tennis in last week.  He lOVES it when he has a chance to play with coach Kenny and any of the guys! He would be at Georgia Tech everyday if I would let him...lol!

He had clinic on Friday and did really good! After talking with Dr. Aguilera we believe the headaches and vomiting are from trying to wean him off to many medications at once.  One medication called Decadron (steroid) Nolan needs to get off as soon as he can.  Strangely he's not as moody on it as he usually is but it's causing his blood pressure to be too high.  So we had to add norvasc to the mix of meds to bring those numbers down.  Also in theory she thinks the decadron mixed with the avastin (IV chemo)  is also causing the kidney problems.   Please be in prayer that as we wean him off decadron that he won't have any more problems.  He went from one milligram to a 1/2 milligram this past week and so far so good.

I just wish I could describe how good Nolan's doing.  It's just incredible! His blood counts didn't even drop after this last round of chemo.  They actually showed improvement each week!
I truly believe that the tumor's were affecting Nolan's ability to smile and now he's smiling and laughing all the time.  I just want to cherish these happy moments forever!!