A little improvement

Today was better!

We almost thought Nolan wouldn't get his chemo yesterday because his blood pressure shot up really high and we had a tough time getting it back down to normal. After getting some extra norvasc and some loratab for pain it improved a lot! After a 5 week delay Nolan finally received his IV chemo :-) He has thankfully been able to continue the oral chemo (temodar) with no problems.

Today Nolan was able to get through the whole day with only one dose of tylenol! That is a really big difference from before. He's still really sleepy, I think his body is still extremely exhausted from all the pain. I just couldn't even imagine....

We were able to get Nolan out of the house for a little bit today and took him to Noah's Ark (a small zoo near our house) to have a picnic and see some Monkey's. Nolan loves Monkey's :-)
I would say he was able to sit up for about 45 minutes with no problems and he had a good time but slept the rest of the day. I'm so ready to see him at 100%


As of right now I feel like I'm holding my breath...
If he continues to show improvement tomorrow I will feel the neurontin is helping.

Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:22-23

-Brittany

home

We decided it was best for Nolan to come home. Even though he still seems very sleepy he had been headache free for 24 hours and they really weren't doing anything that I couldn't do for him at home. We get home and Nolan tells me he has a headache again :-(
I'm still seeing small improvements in him and I hope it continues. As of right now we still think the everolimus drug is causing all Nolan's problems. I'm going to continue to keep a record of everything and he should go back to clinic next week so we can discuss what to do next.

Thank you for all the continued prayers!
Brittany

Today was not much better...
They had us all over the hospital. He saw the doctor, had a CT scan then saw the neurosurgeon. The CT scan was pretty much normal but the ventricles were slightly larger then the last. Dr. Reisner reprogrammed his shunt to drain a little faster. We hope this takes care of the problem but Nolan was still in a lot of pain this afternoon. He's basically been glued to the couch or the bed :-( Everything else looks wonderful! His blood counts are perfect! We just can't figure out whats causing all the pain? We discussed whether to admit him but really there isn't much they would do except observe him and Nolan wants to be home. So we have started a headache diary. Maybe we can figure out a pattern and be able to solve the problem.

The doctor decided to hold his IV chemo until he's looking and feeling better. He will go back Friday for a check up and maybe to resume chemo.
Thank you for continuing to pray for Nolan!
Brittany

headaches

Well, the headaches are back...

Nolan started acting funny and sleeping alot during the weekend. Although he wasn't feeling his best he was still able to do what he likes best at camp sunshine and climbed the rock wall :-) On the way home Sunday he started complaining that his eyes hurt and by Monday he was having headaches again. Today was pretty bad. He spent most of the day in bed up until this afternoon then he told me he wanted loratab and he was going to karate. I could tell he was miserable...
Poor guy, he came home and went straight to bed.

He has a doctor appointment in the morning. I'm not sure what his doctor is going to say about what is going on now? Please be in prayer that we can figure this out. It just doesn't make sense, he was feeling and doing so good...

Thank you!
Brittany


Pictures of camp sunshine are on Nolan's flickr account

check up

Nolan had clinic today to check blood counts and his incision and everything looks wonderful!!
Hemoglobin is 12.5, Platelets 185,000 & ANC is 6,000!! AMAZING!!! He will be able to start oral chemo (temodar) Sunday. We will attempt the decadron wean again. Please pray for no problems with this.

All in all Nolan is doing Awesome and is looking forward to family camp sunshine this weekend!!
Next clinic appointment is the 17th. He will be able to get his stitches removed and resume his IV chemo.

Thank you for praying for Nolan!

Brittany

home!

Yes, we are home!! CT scan looked really good and Nolan is continuing to improve!
He has a clinic appointment in a week to check his blood counts and then he will go back in two weeks to resume his IV chemo and have stitches removed. I know this is short but I wanted to update everyone and get some sleep. I'm exhausted...lol!

Thank you so much for continuing to keep Nolan in your prayers!!

Brittany

WOW!

After discussing everything we really felt it was best for Nolan to have the surgery and get his shunt revised. From what I understand Dr. Reisner flushed the tubing, changed the valve and clamped off Nolan's extra shunt. He has an incision on the side of his head that looks like a "c" thankfully he didn't have to go into he stomach. The stomach is such a tender spot...

I would say Nolan slept about several hours after the surgery then he popped his little head up and started drinking coke. He's been up ever since laughing, eating, coloring and watching spongebob. He is one tough dude! He will have a CT scan in the morning to make sure everything is functioning correctly then hopefully he will go home either tomorrow or Thursday.



Thank you everyone for all the encouragement and prayers!!

Brittany

A BETTER DAY

Only one headache today! Woohoo!! that would be the good news!
Nolan still seems to have difficulty sitting up for long periods of time. I took him on a few walks today in his wheelchair and he would tolerate it for about 30 minutes. I took him down to the cafeteria tonight because he wanted to pick out food that he wouldn't eat...lol ;-)
His face started turning red and his head started hurting really bad...poor guy

Nolan was able to do another shunt study today and did a wonderful job! The results were about the same as the last one. Everything is kind of inconclusive. It all comes down to Nolan might be in that small percentage of kids that there is something wrong and they won't know what it is until they surgically go in there and fix it. So he is on the schedule for surgery at about noon BUT we are all going to discuss all the details in the morning. I just don't want to do this and this not be the problem. I'm really praying for peace about this decision. I know Nolan is in God's hands and Dr. Reisner is really good at what he does and will take wonderful care of Nolan.

Brittany

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10