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