Nolan's celebration of life will be at 

Oak Hill Baptist church

100 lakeside drive

Williamson, GA

Saturday, June 7th at 11:00am

Outdoor pavilion 

 Please wear a rally for Nolan t-shirt or a slime green t-shirt. (Nolan's favorite color)

Thank you for all the continued love, prayers and support! 

Brittany 

I have fought the good fight, I have finished the race, I have kept the faith. (II Timothy 4:7 NKJV)

Hangin in there

I'm sorry for not taking the time to update.  I just don't have the time to and I can never find the right words....

Nolan has been home 2 months now.  He was declining very rapidly when we first brought him home.  He immediately lost his ability to speak, swallow and show any emmotions (can't smile). Ever since then he's just been hanging in there and we are enjoying every moment with him.  He isn't in any pain and is not requiring any pain meds,  His seizures seem to be under control and he seems very peaceful.  We were finally able to start his functional formularies liquid hope (we had fund raised for this a while back... www.functionalformularies.com) as soon as we got home and he is on a "no sugar" diet. It's really not a big deal for him because he doesn't eat by mouth but it has made the biggest difference in him.  His bloodwork looks awesome, he hasn't vomited in 6 weeks and just all around he is doing good considering his situation.  We know this is probably not curative for him but is giving him the best quality of life we can give him right now.
The only issue we have had lately is that he got a wound on his shunt valve and now his valve is exposed :-(  We are keeping it covered and just praying it doesn't get infected...

Thank you for all your continued love, support and prayers!
It will be very rare that I can get on here and update but if you want to follow his facebook here's the link....
https://www.facebook.com/CapsForACureNolanBlake

~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



PRAY FOR NOLAN BLAKE FUNDRAISER ACCOUNT:

An account has been set up for Nolan's financial needs. All proceeds will be used to off-set expenses associated with Nolan's illness and care.

Donations can be made through United Bank of Griffin, GA. Branch locations are available via their websitehttp://www.accessunited.com/ . Remember, account is under the name, "Elisa Dupree, Pray For Nolan Blake".

donations can also be made via paypal.  The email is...
prayfornolanblake@gmail.com

I can't even describe the past three months but after three rounds of the new chemo Nolan will have an MRI on Friday.  This chemo was nothing we could have ever prepared for or wanted Nolan to have to go through. As a mom you want to protect your child from anything and everything that could hurt their small growing bodies but I couldn't do this for Nolan. On top of that I'm constantly reminded that Nolan will never have a chance to grow up. When Nolan was first diagnosed I told myself I would not let fear drive me on this journey, I would let my wonderful Heavenly Father carry us and he has. I couldn't have done any of this without him. I'm going to continue to trust that he is going to get us through these difficult days...

I don't know what to say but I feel We are running out of time and I just want time to stand still. We have had an amazing four years and I hope we have many more but I know we are not promised that. My prayer tonight is for God's will in Nolan's life. Yes, my humanly flesh tells me to be nervous, scared and part of me wants to be angry but all I can do is pray.  Deep down I know what to expect of Fridays results but I'm praying for a miracle...

~Brittany 

When I am afraid, I put my trust in you. (Psalm 56:3 NIV)

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 NIV)

Nolan has had an awesome day!!

The bi pap came off with no problems and he hasn't had anymore seizures so he got all the leads taken off of his head :-) 

Please be in prayer that he will have a good night so that he can be in a regular room tomorrow ;-)

I don't really know what the plan is after that but we are just taking it one day at a time...

~Brittany 

So sorry for not updating...

Nolan continued to have seizures over the weekend and he had to be moved to the PICU so they could get everything under control in a safe and fast way.  Today he's finally been awake and talking more! Which we love!! 

 Unfortunately he has not been able to come off the bi pap without desating. The doctor ordered an X-ray and Nolan's lungs look great. So this problem is either seizure related or because of the decadron wean.  They are going to try to take the bi pap off in the morning and if he does the same thing they will have to increase the steroids. Decadron is such a necessary evil but if it gets him out of the ICU we will take it. I have a feeling we will be discussing the next steps with Nolan's treatments soon. They don't want to do an MRI (because of the sedation problems) and we have determined the topotecan (chemo) is causing his electrolytes to drop... which is causing the seizures. We can't do this to him every month. So please be in prayer that we can get him off the bi pap in the morning and that we will make the right decisions for Nolan....

Thank you for all the support and prayers!

Brittany 

MRI

Well, MRI did not work out...

It was cancelled Monday because the anesthesiologist would not sedate Nolan with Propafal because of him being on bi pap at night but suggested general anesthesia or no sedation. We decided to avoid general anesthesia if at all possible and would try no

Sedation today. He was given Benadryl and Ativan right before the MRI to help him sleep and to relieve some itchiness he's had going on but he could not lay still. When you have to itch you have to itch.  Poor boy has been miserable with this itchiness for about 8 months now and nothing helps. The only thing that will give him temporary relief is Sarna.

So the plan now is to work on getting him to rehab and he will start his next round of chemo on Saturday. In the meantime they will work out the details of when and how he gets his next MRI.

Thank you for all the prayers and support!!

Brittany 

Please pray for Nolan and Brayden to have good stable scans tomorrow!

Nolan is doing good but did have to have another shunt surgery yesterday. Thankfully everything went well and so far no more problems :-) we are just patiently waiting for tomorrow's MRI's to reveal the next steps....

Thank you for all the prayers and support!

Brittany