Update

Wow! Sorry for not updating. I haven't had much time for a full update....

Nolan was doing good and even though he was in the PICU for Christmas it was a good Christmas until that night he started seizing again.  Apparently his sodium and his calcium dropped again pretty quickly.  He got past that and we were able to get all his labs stable then his oxygen need started increasing and the doctor had to re-intubate.  What we think happened was they were trying to flush all the chemo out with lots of IV fluids and Nolan hasn't been able to get out of bed so the fluids went to his chest.  So far they have drained about 700 mls from his right chest his left side has some but we are hoping to get rid of it with some lasix.  The cultures they got from the fluids drained hasn't shown any sign of infection. Thank goodness!!  They are doing antibiotics anyway just because his crp levels have been increasing.  We're trying to cover all our bases.  Just be in prayer that tomorrow's x-rays will show continued improvement and we can continue to work on getting Nolan off the vent!

Brittany 

Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer 

Romans 12:12 

Progress

Short update...

The breathing tube is out! Thank goodness!!

We were hoping he would go straight to an oxygen cannula but he was struggling too much.  He's on a bi pap machine but is already making progress with that :-) he's such a strong boy!!

He finished round one of chemo last night and his blood counts are already starting to drop.  He will probably need platelets and blood tomorrow.

EEG results showed no more seizures :-) They have already increased his seizure meds to hopefully prevent this from happening again.  The MRI results showed a little more progression in the brain but the spine is still stable.  We weren't sure that we would see a difference yet but we were really hoping for stable scans...

We will do at least one more round of this chemo and if no changes we will stop and trying something different.  Nolan has an amazing, never give up attitude and I am right behind supporting him.  

Thank you for all the prayers!!

Brittany

Today was supposed be day 5 of 5 of Nolan's first round of chemo. I was hopeful that it would end in smiles and we would go home and make Christmas cookies and just get excited! It didn't happen quite how we planned...on the way home yesterday Nolan started seizing and was having a difficult time breathing.  I continued to be amazed at how God put us in the right place at the right time.  Everyday this week we have had to go through horrific traffic! It should only take about an hour and 1/2 to get home but it has taken close to 3 hours everyday. It would have been a nightmare if this had happened right in rush hour traffic!  Anyway after getting through all the horrible traffic we were at the Hudson bridge rd exit when Nolan started seizing.  There happens to be a choa urgent care center RIGHT off that exit.  AMAZING!!  They had to give Nolan 4 shots of Ativan to stop the seizure, they intubated him and life lighted him back to Scottish rite.  I have to say I have never been so scared in all my life but God had given me such a peace about everything! I know no matter what God is in control of Nolan's life and that is the only thing that keeps me calm...

Nolan's sodium, magnesium and calcium were all really low and that there can cause a seizure.  We believed this was caused by the cytoxan (chemo) he's getting.  I failed to remember the same thing happened in 2010 when he was getting this chemo just without the seizures.  They have also done an EEG but I don't have the results back yet...he's in the MRI right now to rule out any other problems.

As soon as he comes out of the MRI the doctor will start trying to wean him off the breathing tube.

Please pray for stable scans and for Nolan to be able to breathe on his own without any problems.

Thank you for all the love, support and prayers!

Brittany

The schedule

I think we have everything worked out...

Good news is Dr. Aguilera was able to plan all Nolan's chemo to be outpatient :-) The hard part is it's everyday next week :-( Nolan will get infusions of cytoxan and topotecan Monday, Tuesday, Wednesday, Thursday & Friday. Wednesday will be the longest day because he will get his IVIG.

Driving back and forth everyday sounds like ALOT but it is really important to Nolan to be home as much as possible. The following week is when we expect his blood counts to start dropping. So right before Christmas he will need to go in the clinic and get his counts checked and receive a neulasta shot. The neulasta shot will help his ANC ( ANC is the measure of the number of infection-fighting white blood cells) bounce back quicker. 

I know this is short and hopefully not confusing...

I'm trying really hard to keep everyone Informed as much as possible. It's going to be a difficult week next week but please pray that everything will go smoothly. 

Brittany 

I can do all things through Christ who strengthens me. (Philippians 4:13 NKJV)

We have a plan

We had a good visit today despite the news.  Dr. Aguilera had a neurologist come in and do a full evaluation of Nolan while we were in clinic.  It does appear that the tumor is pressing on a nerve or something... It's causing a lot of stiffness in his legs and ankles. This explains why he's doing some toe walking and falling all the time. We are hoping along with new chemo and some leg/ankle braces it will help him still be able to get around.  I believe all the tumors In the brain are showing progression but dr. Aguilera is not concerned with them yet...the most concerning one is in his spine.  If we are not able to shrink this one it will affect his legs, arms and breathing.  Extremely hard to think about this....

Our decision is to go with a chemo that is a little heavier than he's been getting to hopefully jump start the regimen then switch to oral. He is getting one new chemo that he has never tried (topotecan) and one he's had twice (cytoxan).  He will more than likely have to be inpatient to receive these and need blood transfusions.... 

Even though things seem discouraging We are all in good spirits! I know God has a plan for his life and we CHOOSE to enjoy every moment with him. Each day is a gift! 

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for The Lord your God will be with you wherever you go. Joshua 1:9

Thank you for all the prayers!

Brittany

MRI results

Nolan's MRI was unexpectedly moved up to Friday and we had results by that night. It appears Nolan's tumors are growing again :-(  We will meet with Nolan's doctors next week to discuss our options.  Please continue to pray for Nolan!!

Thank you!

Brittany 

MRI Monday

Some amazing friends stepped in and took these sweet pictures of the kids with Santa.  I love them so much!!

I'm sorry it's been so long since I've updated…
Facebook has been the way to go for short update and pictures.  I needed to simplify things and I have loved it!! I will always keep his website updated but there won't be as many.  Here's a link If you are interested in following him on Facebook https://www.facebook.com/CapsForACureNolanBlake

For the good news,
Nolan's kidney's are getting better and the ultrasound showed that everything was normal.  Such an answer to our prayers :-)
For the bad news,
Nolan's walking is getting worse everyday.  He can't even walk around the house without falling :-(  He seems perfectly fine other than the walking problems.  He's still his sweet, happy self! :-)
The plan now is to move up his MRI ASAP.  So extremely early Monday morning he will have an MRI of the brain and spine.  Please, please be in prayer for stable results!

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