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 

Nolan has made amazing progress! No more seizures!!! Woohoo!! :-) his speech is almost completely back to normal and he's getting noticeably stronger. The EEG is off and the drain is supposed to come off This afternoon. He's still having a little bit of trouble keeping all his electrolytes up. His magnesium, sodium, phosphorus & calcium are all low or border line low.  This has been a continuous problem since he got the cytoxan back in December. Hopefully over time it will correct itself but in the meantime we will just use supplements. He's still in the ICU but we are working on getting his sodium from an iv drip to a g-tube med.  Once that's done and he's holding his levels good he can move to a regular room :-)

Thank you for all the continued prayers!!

Brittany 

Nolan was up at 3am this morning asking for juice :-)

His sodium is back to normal and he's trying to say things but his speech is still very slurred. He is also showing more weakness on the left side of his body. He hit the right side of his head and had surgery on the right side so it looks like it affected his left side.  Some of the doctors want to do an MRI but I think we are going to hold Off right now. We don't want him under any sedation right now unless it's absolutely necessary. He's still having some seizures...

He had about 15 yesterday and 6 overnight.  The neurologist came in and made a recommendation for a fairly new seizure med that has been really helpful in kids with brain tumors so I think we are going to give it a try today. 

Thank you for all the prayers!! 

Brittany 

The last few days have been rough for Nolan...

He was doing so good after surgery that they were going to move him to a regular room but before that happened Nolan had a set back :-(   He had woke up yesterday morning fine and talking but was in pain so the nurse gave him some morphine and he took a nap.  When he woke up he could no longer talk, his teeth were clenched and he was having a lot of facial twitching.  I knew that he was having seizures... He had a ct scan after the episodes which showed the ventricles in his brain are still a little large.  The doctor wants him sitting up in bed to hopefully help with the drainage.  He will have another ct in the morning to make sure this Is looking better.  Please be in prayer for a good scan! I really don't want him to have to have another surgery.  The other problem he has going on is when Nolan went into surgery he had a normal sodium of 141 the day after it went down to 127 which triggered the seizures.  He's getting continuous EEG monitoring, they have gave him a bolus of two different seizure meds and have him on a slow drip of sodium to hopefully get the seizures under control again.  There is talk of doing an MRI tomorrow if things don't improve....

Thank you for all the continued prayers!!

Brittany 

Nolan has been very sleepy the past few days and I related to the fact he has just been laying around a lot lately.  so when yesterday was beautiful and sunny I encouraged him to get outside and walk to the end of the driveway and back with his walker.  All the kids were outside and Nolan was really enjoying being outside till all of a sudden his legs gave away and he fell backwards hitting his head on the pavement. I quickly rushed him to the ER where they did a CT scan of his head and realized he had a brain bleed. On top of that apparently his shunt had started malfunctioning sometime in the past week or two.  Our biggest concern was the low platelets could cause things to be even more serious but after test were run we realized Nolan's platelets went from 52,000 on Tuesday to 163,000. Talk about a big recovery!! The doctors thought it was a mistake so they ran it again but it was real :-)  He did have surgery last night and the neurosurgeon was able to remove a pretty large blood clot, he replaced the valve on Nolan's shunt and put in an external drain to remove the excess blood off of his brain.  The whole surgery went really good! The anesthesiologist prepared me for him to come out on a breathing tube because of his recent case of pneumonia but Nolan came out breathing on his own and talking.  He's doing super!! His CT scan this morning was much better! So hopefully the drain will come out in the next day or two. He will stay in picu at least one more night as a precaution and then he should be able to move to a regular room. 

Thank you for all the continued prayers!!

Brittany 

Nolan had a wonderful clinic visit today! All his bloodwork looks great! The only thing the topotecan (chemo) seems to have affected is his platelets. They were 262,000 a week ago and now they are 62,000. No need for transfusion right now but will keep an eye on it with some follow up labs next week.

The doctor and I talked a little about chemo and we may add two more drugs eventually but first we have to get Nolan weaned off of decadron because it doesn't work well with one of the chemo's.  He was started on decadron (steroid) In the hospital to help with inflammation in the lungs and anything that could be going on in the brain.  So far he has done great with the decadron weaning and it will probably be another 2-3 weeks before he's completely off.  One of the drugs we discussed is avastin which he's done for years and has been off of for a couple of months.  The other is an oral pill that I don't know much about yet.... 

Please be in prayer that the decadron weaning goes smoothly and he is able to start these new chemo's. I always feel the chemo works better in combinations. I could be wrong but that's what's he's always done.... 

Thank you for all the birthday wishes!! Nolan had an awesome day :-)

Brittany 

Nolan finally made it home from the hospital this past Saturday.  I know I should have updated but things have been chaotic.  Nolan is doing good but since he's been in bed for the past month he has totally lost his ability to walk unassisted.  Nolan doesn't seem to upset at all! He just tells me he's going to work on getting stronger everyday.  He's as happy as can be no matter what situation he's in. I feel so blessed that he has such a good attitude :-)  In the meantime since he can't climb stairs we have had to move him into my Mom's house.  It's been hard to be apart from him at night but my Mom lives right in front of us and I know he's safe and well cared for.  Nolan seems to take the move just as well as everything else and he's ok with it. We are happy to be home and so thankful! Nolan is just a miracle.  The only way I can explain how he came through what he did was God having his hand on him.  WOW! The power of prayer is amazing!!!

Nolan will have clinic Friday for his hospital follow up and to check all his labs.  His phosphorus and Magnesium have continued to stay low but we are giving him supplements in hopes everything will look good when he goes in Friday.  We also probably discuss whats next with the chemo.  Should we continue what we are doing or look into other treatments.  Not sure yet but praying we will make the right decisions.

Tomorrow is a big day for Nolan!! He will be 11 years old!! Please wish him a Happy Birthday  and I will read all the messages to him :-) :-)

Thank you all for the wonderful love and support!!

Brittany

Nolan really enjoyed getting to hold a little bunny named Thumper in the garden at Scottish rite yesterday. He loved every minute of it :-)

Today is the last day of chemo for this round!! Woohoo!!

We are getting a bi pap machine delivered to the hospital today and tonight they will work on teaching me how to use it and make sure he tolerates it ok. If everything goes good he will be able to go home tomorrow!! So excited!!  In a few weeks they may do a sleep study to see if he will continue to need the bi pap.  He's doing so good I have a hard time believing he will need it for long :-)

Jesus looked at them and said, "with man this is impossible, but with God all things are possible." 

Matthew 19:26

-Brittany 

Sorry for the lack of updates but Nolan is doing awesome!!

 He's been working with physical therapy on walking.  It's going to take a little while for him to get back to his baseline but Nolan is ready and willing to work for it!!

He's totally on room air during the day and the pulmonologist has cut back on his breathing treatments and bi pap settings (still using the bi pap at night while sleeping).  He will have an x-Ray in the morning to make sure his lungs are still healing nicely.  I just never expected this kind of turn around and I don't think the doctors did either.  He will get chemo today and tomorrow then we can hopefully talk about going home :-)

Thank you for all the continued prayers and support! You all have been so amazing! 

I also want to thank all those that donated to Nolan's liquid hope fund! Wow! 

http://www.indiegogo.com/projects/nolan-blake-liquid-hope-project

Just can't believe the wonderful turn out we have had!

Thank you! Thank you! Thank you!!

Brittany

Awesome progress!

Nolan finally got some good sleep last night and he is still sleeping right now :-) 

He really needed that because he hasn't been resting well at night....

His blood gas looked good enough to reduce the oxygen on the bi pap at night but they are not going to reduce the pressures yet.  He is down to 1 liter of oxygen during the day but can go several hours with just room air.  He is still doing amazing and is really getting bored with the ICU....lol! We are hoping to see a regular room soon!

Thank you for your continued prayers!!

Brittany 

Nolan is doing amazing!! He is just surprising all the doctors here with his progress!

He went several hours this morning on room air with no problems :-) He did end up going back on oxygen because we want to slowly wean him to prevent any problems but he's only on 2 liters.  At night he is still on the bi pap but he will get a blood gas in the morning to see if we can start backing off of that.  All in all he is doing incredibly good!! We are hoping he will be out of ICU by Monday and in a regular room but then more decisions come.  His oncologist is talking about doing another round of chemo before he goes home but I just don't know yet....

Please continue to pray for guidance with all the decision making process.  It can be exhausting and I want to do what's right for Nolan.

Thank you all!!

Brittany 

Nolan is still in the ICU and still on the bi pap but he's doing good! There hasn't been many changes.  All his lab work has been great! He had a small issue yesterday that they were concerned about but has since resolved. Now it appears he has a little mucous plug in his right lung again causing some more problems.  We are just trying to be very patient and hope that Nolan will continue to get better with each day.

 We haven't decided on the next step with chemo yet.  His doctor and I discussed it a little and decided we would wait till he's out of the ICU first.  So please be in prayer for guidance with these next steps in Nolan's treatment. 

We have no idea how long it's going to be before Nolan gets out of the hospital but our goal is for him to be home for his birthday (January 23rd) and maybe a special trip. We will see ;-)

Brittany

Nolan was finally extubated! He is currently on the bi pap and will try hi flo oxygen in a little while.  Even if he can't stay on the hi flo oxygen at least it will give him a break.  One of the respitory therapist described bi pap as feeling like you have your head out the window while you are driving down the highway :-/ Nolan just does not rest well when he's on bi pap and I can totally understand why.  I'm just praying for improvement and to get him to regular oxygen so he can get out of ICU...

His blood counts are still good and improving day by day, his crp levels are still coming down and his magnesium, calcium and sodium are all still stable :-) just need for his lungs to continue to improve!!

~Brittany