Nate Update from his Dad

7:52pm Dec 17

Nate's week has been very good at times and at other times a struggle. He has had lots of problems with his stomach...even with meds to help him out he has spent a lot of time in the bathroom this week. He has however had some very happy moments and has gotten more sturdy in some aspects. It has been very up and down...he might be strong in the morning and then weak in the afternoon or the opposite the next day. Today seemed to be his best day in a while...he has stayed awake today for the most part and had been playing quite a bit..in fact, right now he is playing NBA 2K13 and Skylanders against his brother and is talking trash so its going good right now. He also actually ate an eggroll and Chinese potstickers today..he asked for them off my plate...he would have never eaten these before. Hopefully tomorrow will bring more good progress. We are grateful to God for everyday and praise HIM for being with him. The time release chemo should be at full force within the next couple of weeks so we pray that out can wipe out the cancer and open up more options. Next MRI is in January in Los Angeles. Nate is a walking miracle each day he is alive and we thank YOU God for each moment. Thanks to all of you for continuing to pray for Nate...we feel your prayers and know that they are working. Here is a picture of Nate right now smiling after just beating his brother...I love it, nothing like brotherly competition to give you a reason to sit up and get going...Nate has never been one to give in! Praise be to GOD!

Update from Philly

Hopefully all of the posts with pics will keep this from being so boring.

It's an update post for those of you that are so sweet to keep asking how things are going and what we learned in Philly.

I am experiencing one of the worst months ever.  I have had more seizures in the last twelve days than I have had in entire months.  I have taken a rescue med seven of those twelve days (this is a much stronger med that can't be taken as daily therapy due to severe side effects).  The doc also gave me a very strong immune-suppressent IV over the weekend hoping that would help.

My amazing home health nurse is super busy and hasn't been able to come do any of my treatments recently.  So, her Mom was covering for her.  However, her Mom has a new job.  This weekend the home health company sent out their "best" nurse to start the IV that the doc ordered.  You can't see it very well in the pics, but she bruised me up pretty well and yet couldn't get a line started...after three tries!!!

I've got bruises in both arms from her trying in all of the places that I told her didn't work well.  Then, Mom ran into a friend of mine from high school at 7-11 that evening.  She had seen my post on fb asking if anyone had experience with starting this type of IV.  Turns out she was on the IV Team at a big local hospital.  So, she came over and got it in one stick and didn't leave a mark, no bruise at all.  I am so grateful for her sweet heart and willingness to come over.  She brought her daughter with her and Miss P just loved having a friend to play with while Mommy got her IV started.


With the exception of one month when we were starting the IVIG in 2011, the average number of seizures I'm having per day hasn't been this bad since I was diagnosed and we were trying to get the right meds, dose, etc.  They were starting to increase in November of this year, but they still weren't this frequent.

I've also been battling a severe migraine for five days.  Today was the first day that wasn't so awful.  The doc wanted to call in a Hydrocodone earlier in the week because it was so awful, but I'm allergic.  So, we just endured.

Once we returned from the hospital in Philly, the lead doc there called us to give us his opinion after reviewing everything (i.e., my files from the brain surgery, all the scans/tests they ordered while in Philly,  the EEGs from while we were there, etc.).

What did we know vs. what did they find?

• We knew my seizures were on both sides of my brain.  Thus, making surgery too dangerous of an option in 2008.  However, the seizure medicine seems to control the ones on the right side.  So, the theory was that they might be able to do surgery on the Left side if I stay on meds forever to control the Right side.

• They found that all my seizures while in the hospital were presenting in the Left temporal lobe, but the records they received from the brain surgery made it very clear that they are occuring on both sides of my brain, if I'm not on meds.

• We knew that the docs were leaning in the direction that my seizures are autoimmune related.  However, each time we've tried to treat them as such, the seizures get worse and I have terrible side effects from the treatment.

• They found that they probably are autoimmune in nature, but don't have any other treatment options except for what I've tried in the past.  So, they want to retry the IVIG therapy for six months.  The doc in Philly said that he's had some patients that don't respond until month #6.  Thus, he wants to try.

• We knew that surgery was a dangerous option, but we have exhausted every other option.

• They found that surgery might be more dangerous than we thought since my Left side is my dominant side.  As well, just because the seizures are presenting in the temporal lobe doesn't mean that's where they are starting.  T  They could be much deeper.  So, they would implant depth electrodes before doing surgery to find where they are really starting.  Thus, the doc was pretty convinced that he wants to try the six months of IVIG therapy before saying yes to surgery.  The doc said that if my MRI or PET Scan come back abnormal, they would immediately do surgery.

• We knew that my MRIs and PET Scans were all coming back normal.

• They found that my PET scan didn't show any abnormalities, "but it's not good vs. the average patient."  They believe this is because my EEG is so "hot." We understand that to mean too many seizures.

• We knew that there were a lot of times throughout the day when I just felt yucky, but didn't actually record that I had a seizure.

• They found that I'm actually having more seizures than I record.  He implied that I'm seizing quite frequently throughout the day.  So, all of those "yucky" moments are probably all seizures according to him.

So, the doc wants to try aggressive immuno-therapy for the next six months.  Somewhere in there he wants to do another PET Scan and more 24 hr ambulatory EEGs (at home, in a normal environment, not in the hospital).  If I have no response to the IVIG then they will do surgery after six months.  We did IVIG for 6 weeks (May-June 2011) and the seizures got much worse and I had terrible side effects.  So, we stopped it.  Then, we tried again in November 2011 and the side effects were just as yucky with no improvement in the seizures.  Thus, I'm a tad concerned about restarting the treatment.  The doc at Mayo described the side effects I was having as basically getting meningitis or encephalitis after each treatment.

We meet with my local Neuro on Friday to see what the game plan will be since she has spoken with the lead physician at Jefferson in Philly.

Trust in the Lord with all your heart
    and lean not on your own understanding; 
 in all your ways submit to him,
    and he will make your paths straight.
^{Proverbs 3:5-6}

Little Traveler

Our girl loves to travel!!!

For those of you with children, you know that kids will do the exact opposite of what you expect.  Miss P didn't fail us on this trip to Philly.  We planned each flight so that she would be eating & drinking (keep those ears popping) and then would take a nap.

They put us in the bulkhead and so we had leg room.  Therefore, little Miss P just sat on the floor in front of us and enjoyed herself.

We're flying!  This is so much fun!!!!

Wow!!!

She was desperate for a nap, but couldn't fall asleep.  The sweet passenger next to B even allowed for snuggles. 

So parents or anyone else with kiddo travel experience, how do you get them to sleep?  She clearly wanted to, but there was too much excitement.

This was the flight home.  She made great friends with the gate attendant and got her own private escort on to the plane! ; )

 

 

Greeting the flight attendants!!!

 

After an entire flight with no sleep (once again), she snuggled up with the entire flight crew for a pic!

 The crew was so sweet!  They even took time to pray over me!  Wow!!

Christmas Tree Lighting

With all that has happened since we returned from Philly, I don't know where to begin updating.  However, I will see what we can share.

Two weeks ago we went to the Christmas Tree Lighting for the City.

Miss P with Gamma.

Miss P getting passed around with all of the emcees, etc.

This is Mrs. H.  She was my faith partner at church when I was in the 6th grade.  She was mayor of our City.  Now, she's holdin' my sweet girl!  Wow!!

Getting a better view from Daddy's shoulders!

What could be behind this door?

Posing with Gamma!

Giving Daddy my snuggles!!!

Getting ready to go down the big slide with Daddy!

Whooaaaaaa!!!

That was fun!!  Can we do it again?  Please?

Our cute little gingerbread sweetie!

Concerned about the gingerbread "kiddo" next to her!

Cute, huh?

Miss C posing, as well!!!

We all had a wonderful time at the Christmas Tree Lighting and seeing our friends.

Nate Update

from his Daddy:

8:27pm Dec 10

Nate had a good weekend for the most part. There were some times where all he wanted to do was sleep, but there were some other times that he got up and had a good time. Santa came on Friday night and so Saturday morning was eventful...he said he wanted to make an early visit this year and would be back with some other surprises on Christmas morning. One of the things he brought was the new Wii U console along with several games which peaked Nate's interest and gave him something to strive to stay awake for so he could play with his brothers. On Sunday, the elders from the church had a special prayer over Nate and then others from the church gathered around Nate...he seemed to have a little bit better day on Sunday afternoon. Finally, today was much different. He had to go back to the hospital for some blood tests and a follow up. He has been weaned down on his main steroid over the weekend so we could get a better assessment of his condition. Well, when we left the hospital, we got some lunch and headed home. When his brothers got home, it was like a burst of energy hit him and he played a long time with them and was very animated. He also slowly started walking on his own again and in general seemed to have a great afternoon and evening. His teacher came over to see him and brought cards and artwork from his classmates and I think that helped his spirits a lot also. So all in all, I would say he is making good progress, especially since he has been weaned some off the steroids and we still see good things happening. We have a lot to be thankful for and give thanks to God and want to thank all of you all out there for your prayers, thoughts, and well wishes.

WOW! Nate!!

From Nate's Daddy:

11:31am Dec 7

UPDATE: Nate is steady enough that they are discharging him from the hospital today. They are still very concerned about him and we are being sent home with lots of equipment, IVs, meds, etc. but at least he gets to go home. I think he will start to do even better at home. They are weaning some of the meds that have been keeping him comfortable to get a true assessment of what he needs to get through the day and to tell what is Nate and what is the meds as far as his overall state. Even so, the improvement he has made so far since Monday knowing that the scans are terrible and that they show tumor coating in his brain and spine with rapid progression has been remarkable and nothing short of amazing. Even with the meds, no one could have said that he would look this good again maybe ever....certainly not within the same week. In fact, because of how fast he has gotten back to this point tends to make you think that he was not and is not in danger of passing very soon...but scans, tests, medical professionals all look at this as an end of life period...they all want him on Palliative and Hospice care and have asked us to strongly consider signing a Do Not Resuscitate for him. We have talked to both Hospice and Palliative both and we may eventually decide to go that direction, but as of right now...we have chosen look beyond the scans and tests and have focused on what we see happening right before our eyes...Nate is improving and improving much more and quicker than anyone believed he would or could have...we know God has done this for Nate and that without HIS mercy and power that Nate would not be alive today. We were told Monday that he may never wake again for anymore than a few minutes. I want to make out very clear no med, no doctor, no parent, and as much as I think of my boy as the ultimate fighter and super hero...none of that and none of us could have made or done what happened this week. I don't know why he has not died yet, I don't know why others have....I wish all of these kids were cured right now...I also don't know if what might happen to Nate this weekend, this month or this year or the next. Truth is, he could make it through something like this ten more times, a hundred more times...or he could be doing better than he ever has done since having cancer and die that day. I have learned to enjoy each day with my all of my sons and to be the best dad I can to them...because I do not know what tomorrow holds....but I do know this, GOD is in control and no matter how bleak the situation gets, he knows about it and that if I talk to HIM and ask for others to pray also, then HE listens and HE decides what is best. I don't know what is best, I don't want to run the world, there is so much comfort in knowing that HE had that covered. So today we are going home, tomorrow who knows, but come what may PRAISE BE TO GOD!!! I don't know any other way to cope...it seems to make the most sense to turn to HIM in prayer and to ask others to do so also. Thank you all for your prayers and for turning to HIM on behalf of my Nate. I desire that GOD will bless you and keep you close to HIM for the love that you have shown toward my family. To GOD be the glory and may all of heaven and earth shout his praises! As things develop toward more care and we have more answers, I will send out updates. Right now, the hope is that a time released chemo drug in Nate's body will release over the next six weeks and eradicate the cancer and that we can then run further MRIs, assess where we are at and then go from there most likely in Los Angeles...please continue to pray for continual improvement. Thank you again and may GOD bless you all.

Another exciting Nate Update!

From his Daddy:

1:56pm Dec 6

Nate is flexing his muscles having a good time today. Yes, this is still a serious situation. Yes, medically what's on the inside does not look good....at least not yet! However, Nate is feeling better and better and looks better and better. He is making big strides. This really is amazing to watch...almost unbelievable! He still has a long way to go and is far from 100%...but he is now in a place that on Monday no one would have ever expected him to be in today. The thought was he may never really stay awake for long again. In fact, even with all the progress we listened to the doctors wishes and talked to Palliative and Hospice because they want us to have that ready for us "just in case"...we realize that to make everyone comfortable it was the right thing to do...we listened and told them if the time came where we thought we needed it, we would let them know but with his improvement and especially so quick we don't think that is now. I wish everyone could be in the room to see this develop...it has God all over it...there is still a long way to go, but for today....Nate is full of life. Keep the prayers going...Nate feels it! Please know that God can do anything and nothing is too big for him! I promise this is really happening and just sends goose bumps all over...LORD, you are so, so, full of mercy and greater and more beautiful than my mind can even comprehend! Shout it from the mountain tops...Amen and Amen!

Nate Update-Yippee!! Praise the Lord!!

Look who is having a better morning. This is the first time since being rushed to the hospital on Monday that Nate has been able to sit up, stay awake, he crawled, stood up, snickered at Mommy, said a few words that actually make sense, and has watched a little TV. He is trying hard to focus and keep his awareness. This is a big change from yesterday. Keep the prayers coming...Nate is still fighting. God is so good!

Another Nate Update from his Daddy!

UPDATE: Nate slept almost all day but there have been a few brief moments that brought us joy. He looked like he tried to interact a couple of times with his brothers and some people who have been very close to him for years. He followed them shortly with his eyes and seemed to produce a slight grin here and there. He also licked the icing from Jackie's birthday cake off her fingers giving her the best present ever. We tried to stand him up and he can not...just too weak. We ask for progress each day. Thank YOU FATHER for showing us Nate still wants to fight...please continue to give him strength. Thank you everyone for the continued prayers and petitions to God...HE is listening and Nate is benefiting from them. Our God hears our cries and HE knows the desires of our hearts. We continue to send forth our pleas to a good and faithful...a mighty and merciful...a loving and caring...a wonderful and beautiful...a wise and all encompassing GOD...our LORD and our SAVIOR...our only hope in this life and the hereafter. Amen and amen...I will pray and pray and pray for this is a fight worth fighting.

Nate Update from his Daddy

9:53a.m.:

UPDATE: Nate was put on several medications through his central line to calm him and ease the pain. He had a much more peaceful night because of this, but now pretty much just sleeps. His brothers, Jake and Luke, came up this morning and will stay all day. We are hoping as the day goes on with them here that Nate might become a little more responsive without the panic and pain he was having yesterday. We were told a Palliative and Hospice team would spend extensive time with us today covering a plan to keep him comfortable here at the hospital and if he continues to survive and is released. It was very hard for his brothers to see him this way and me and Jackie had to have some conversations with them that were very difficult. We did tell them that no matter what happens that God loves all of us and that Nate is being protected by God and Jesus and that there is no better place to be than in the protection of our LORD. We also all believe that there is a very real chance that Nate could pull out of this and survive and become stronger than ever....we have seen God do amazing things before in Nate's life and nothing should have us doubt that it won't happen again. We again want to thank the literally thousands of people out there praying and rooting for Nate...we feel your prayers and they do help...please keep them coming :) Also the doctors in Los Angeles and here are not giving up...yes, this appears bleak both Drs Finlay and Brown in LA said if he can just hang on comfortably for a few more weeks...there is a small chance that the strong meds he was given last week to fight cancer could very well start to work since they are time released and were our best shot at the time to hit this thing effectively. We still have hope and know that we are on God's timeline and that HE chooses when it is time. God has been there time and time again and can definitely heal Nate once more...but even if that does not happen here on earth, then Nate will be in heaven and there is not a better place to be. Please LORD, let YOUR will be done...the desire of my heart is to keep my son here on earth to be with me and my family and to heal him of this cancer so if YOU are willing, I plead with YOU to let that happen, but either way Nate is YOUR child and I trust that YOU know what is best for him...just please wrap him in YOUR arms either way and hold him close to YOUR heart.

URGENT from Nate's Daddy

@ 7:41p:

It absolutely kills me to even write this but Nate is declining fast. He doesn't even know what is going on and is scared...rambling on and screaming about things that make no sense at all...this is what cancer does when taking over. The doctors in LA also reviewed the overnighted scans and had a serious heart to heart talk with Jackie and I over the phone that unless he started improving there wasn't anything they could do either...and we are talking about doctors who will do things no one else would...who have helped him time and time again. He was given some powerful medicine for cancer on Friday and that is all that is safe to give him for now...nothing else medically can safely be done for him right now to fight this beast. We know God has been so good to Nate and to our family and has blessed us with miracle upon miracle. This is horrible to watch, he is not himself at all and getting worse by the hour...please LORD of heaven and earth protect Nate and heal him. We want your will, Nate is yours, please take care of your child and help him feel better. We cry out for healing here on this earth and for a complete healing. YOU have done it many times before and with YOU Holy FATHER nothing is impossible...Nate needs you now more than ever! Please heal Nate God, please Jesus hear our cries for help!

Update from Nate's Daddy

4:17p:
UPDATE: Thank you for all the continued prayers and petitions to God. Right now he is in the process of them trying to stabilize him. The plan appears that as soon as they can get him medically okay to do so he will be transferred to Childrens Hospital Los Angeles where they will be ready for him. The hospital there and his medical team are getting a plan together to get him as much help as possible. Thanks again for the prayers...I will continue to update when I know more.

URGENT Nate update from his daddy

12:23p:

Desperate prayer need...rushing Nate back to ER...he is delusional and yelling things that don't make sense, can't stand up, extreme head pain and throwing up constantly... Please Jesus help us!

Update from Nate's Mommy

Quick update: Nate is out of the hospital, but goes back to the doctor today. He is still having a hard time. We have sent his scans to his doctors in LA for their opinion. We will update fully when we hear from them, probably tomorrow. Nate's life has been a miracle every step of the way and we are praying for continued mercy and strength for Nate.

I got to be a Mommy & Wife

Wish I knew where to start...

Let's go with the praise!!!

In the last eight days, I have only had four seizures!!!  Wow!!  This is pretty much unheard of...Praise the Lord!!!  I've only had one other time this year that was somewhat close to that...so, it has been a nice break!! 

The catch is that despite the break, I had more seizures in November than I've had any month in the last 18 months.  So, that tells you how many I was having per day.  Last June, when I was in the hospital, it was because I was averaging one more seizure per day than I averaged for November.  So, not much different.  Anyway, the point is that this has been a rough month and the roughest since June 2011.  However, I praise the Lord for the recent break He has given to me.

Romans 8:18: "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." (NIV)

"No, in all these things we are more than conquerors through him who loved us." Romans 8:37 (NIV)

Amidst that break, my man and my little angel got sick.  So, not having many seizures has allowed me to love on them!  Wow!  Thank you, Lord, for allowing me to take care of my two favorite people.  Being a wife and Mommy is a blessing! 

When we got home from Philly, P had a little red spot on her chin.  Last time she had that, it was time for a new pacifier.  This time, it got worse.  We took her to school and asked every Mommy that we saw what it was.  They all said it wasn't a big deal.  When we picked her up from school that afternoon, we just weren't comfortable with the way it looked.  So, we went to the pediatrician.  Turns out she had Impetigo (a rash caused by a bacterial infection).  We purchased the antibiotic ointment, put it on her chin, and laid her down for her nap.  It was much better by the time she woke up from her afternoon nap.  Thank you, Lord!  Impetigo is quite contagious and so the school had to do a quick toy evacuation from her room!  She was able to go back to school on Thursday.  

Pics taken in the doc's office.

B came down with something last Saturday night.  We went to a b-day party at ASI gymnastics and we're wondering about the foam pit since B and Miss P both started getting yucky after that.  B had a fever by the time we went to bed Saturday night and was unable to get up for church.  He slept most of Sunday (I don't even recall him sleeping this much during chemo).  He tried to get some work done Monday from the house.  He felt better on Tuesday.  However, after dinner Tuesday night...not so good!  He didn't get any sleep Tuesday night/Wednesday morning because he was "busy!"  We got him to the doc Wednesday morning.  He wasn't allowed to eat all day Wednesday or most of Thursday, only clear fluids.  So, he finally got to enjoy dinner Thursday night!!!

Daddy, the Olympic Gymnast!!

Daddy, you just came from up there!

Wow!!

This is so much fun!

Then came Friday!  We were getting excited about our date night!!  We've not had a fun date night since the beginning of the month since we were in Philly for two weeks, had the Thanksgiving holiday, etc.  So, we were so excited about our date night this week.  We decided that we were craving our two favorite spots and so we would have, as B put it, "a progressive dinner."  We were going to stop at Whole Foods to get a tiny bit of sushi and take it with us to Keller's.  We would eat our "appetizer" in the car while we waited for our burgers to arrive!!!

Plans changed quickly: As we were leaving Whole Foods, we got a text from Ms. C that Miss P had a fever of 100.4.  She was precious and told us that she had everything under control, but just wanted us to know.  However, we wanted our girl in our arms.  So, we called the doc to see if we could blame this on a virus or could it be stemming from the impetigo.  She said no worries, just a virus.  So, we rushed home and snuggled a bunch with our girl. 

She got to stay up late because Daddy got the Christmas decorations down from the attic.  We told her to just let us know if she felt bad during the night and we'd come get her.  Well, she did...poor baby threw up all over her bed.  So, Mommy and Daddy got some of the best snuggles we've ever had from our girl!!!!  Please pray that she wakes up feeling much better today and that her fever is gone!!!

P.S.  Our girl loves to clean.  After dinner Wednesday night, she worked very hard to make sure that the kitchen and breakfast room were spotless!! ; )

 

Scrub, scrub, scrub!!!

Then, it was time to organize the lunch bags.  Pardon me, her purses!!!