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!!

Clinic update

Nolan had clinic yesterday and we had some really difficult decisions to make. The doctors have been keeping a close eye on his kidneys lately and now the protein in his urine is extremely high. He is also having problems with his hands, feet and face swelling and some of his labs don't look right.  Basically the cause of these problems is from being on avastin for three years.  It just breaks my heart to know the medicine that he has to get to save his life is hurting him at the same time....

So we are stopping the avastin! Monday he has to do another 24 hour protein test to make sure he is improving.  He will also have more labs drawn and an ultrasound of his kidneys. We are hoping that once the avastin is stopped that everything will start improving but we just don't know right now. The good news is his blood counts still look great! His hemoglobin is 12, platelets 380,000 & ANC is in the 4,000 range. 

As far as the itching goes....we are trying new meds and it's to early to tell

He's still stumbling a lot and having a hard time getting around.  We think it's due to the swelling in his feet and his electrolytes being messed up because of the kidney issues. Hopefully it will improve if not the doctor will move his MRI up. 

Please keep praying! 

Brittany 

It was so hard to watch Nolan struggling at karate tonight....

Not sure what's going on but he's having a hard time with balance and walking. He has been falling ALOT!  He never complains...he never seems worried...he just gets up and keeps going.

I took him to the doctor a couple of days ago and he does have a little fluid in his right ear and considering he just had an MRI they really don't think it's cancer related.  It just doesn't make sense :-(

He goes to see the ENT Tuesday and he goes back to clinic Wednesday for chemo and IVIG.  I really hope this gets better but if not we are going to have to get to the bottom of this!! Right now he's on 3 different antihistamines with no improvement :-(

Also the horrible, itchy rash is still on his neck. We did get a new prescription from the dermatologist  Monday that we are trying but so far it's still the same....

Thank you for keeping Nolan in your prayers!!

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

MRI results

Everything went smoothly with Nolan's MRI yesterday and I got a call from the doctor on the way home that everything looks good!!!  There is no shrinkage and there is no growth.  Everything looks exactly the same as the last MRI.  So that makes 10 months stable for Nolan!! WOOOHOOOO!!!

We are so happy and so relieved :-)  

We do have a prayer request...

Nolan cannot stop itching.  It's causing him to dig deep holes in his chest and around his neck.  We have tried numerous medications, ointments, creams, etc...  Nothing is working and it's not only annoying for Nolan but painful.  The doctor has put in a referral to a dermatologist at Emory and we hope they will have some idea's to help.  In the meantime we continue to put bandaids all over his neck to keep him from scratching :-(

Thank you for all the prayers and support!!

Brittany

MRI tomorrow

Nolan has an MRI of the brain and spine tomorrow. Please say a prayer for good stable results!!

I will update as soon as I know something...

Thank you!

Brittany

I am so sorry that it has taken me this long to update...
I think I needed the break and we've been so busy I haven't had much time to sit down at the computer.
We are coming up on the next MRI (October 30th) and need lots of prayers for this one.  After discussing the results with Dr. Aguilera in September it sounds a little scary.  His brain scan was stable, his spine is questionable.
The tumor in the spine was slightly larger and looked different.  It's either radiation changes or tumor growth. Either one is not good for this area of the spine.  We are choosing not to dwell on bad news and are just enjoying each and every day and making the most of every moment.  Nolan is doing AWESOME and that's what counts most of all right now.  All Nolan's blood counts have been wonderful!! He hasn't needed any transfusions in 10 months!! The only issue we have had lately is the elevated protein in his urine.  His kidney's are crying, we have had enough avastin!! He is getting more time between each avastin infusion and this seems to have helped.

Nolan is still loving karate, going to school, riding his bike and trying to make every event he's invited to...lol!!

Thank you for continuing to pray for him!!


P.S.  I have a big favor to ask everyone...
If you have 1 minute every day can you take the time to vote for Duncan Dobie?
Nolan LOVES Camp Sunshine and if Duncan Dobie wins Camp Sunshine will be awarded $100,000!!  Please share this info with everyone you know :-)
Thank you, thank you!! :-)
http://www.nascar.com/award

MRI results

  I Got a call from Dr. Aguilera this afternoon. Let's just say  Nolan's MRI's are very hard to read but we pretty much got good stable news.  The tumors in his brain are stable and actually showing some improvement :-) Some of the tumors in his brain are just stable and some are not as bright as they once were.  The spinal tumor....The one that likes to give us all the problems is looking different.  The radiation oncologist looked at it and said it looks like radiation changes to her....

Nolan is 8 months post radiation and he is right at that peak time where the radiation is at its highest then it will start coming down.  This can cause a lot of inflammation in and around the tumor.  From what I've been told? I just dislike the word "radiation changes"   What we have decided is to do MRI's every 2 months instead of every 3 months to keep a closer eye on everything.  Nolan goes into clinic tomorrow for us to go over all the images of his MRI and to discuss it more.  If anything changes I will be sure to post but Nolan is doing fantastic!!!!!!!!!

He Has just been so full of energy and smiles lately and that's what we like to see :-)

Thank you for continuing to pray for him!!

~Brittany

pictures from Nolan's weekend at the Atlanta Motor Speedway

      Nolan with Carl Edwards

     Carl Edwards signed his Peaches Neet Feets

     Nolan with Richard Petty

back to school

Sorry it's been so long since I've updated.  We have been so busy enjoying our last days of summer!

The kid's went back to school last week and are loving it :-)

Right now Nolan will go two days a week and we will just increase the days as he is able to tolerate.  

Medically Nolan is doing good.  The only problem we still have is his vomiting....

We have tried every vomiting med you can think of and nothing works.  It might help but it doesn't stop it completely.  He has lost about 5 lbs in the past few months so the doctor switched him to a high calorie pediasure and hopefully we can get him to keep it down.  If not we will have to replace his g-tube with a GJ tube to bypass the stomach.  Nolan is not happy about that :-(  Just be in prayer that he will gain weight and the vomiting will slow down.  

Nolan had clinic yesterday and he was able to get his IVIG and IV chemo without any problems.  Next big thing is his MRI on August 30th. His doctor is out of town so we probably won't get results until after Labor Day but I will let every know as soon as I can.

Thank you for keeping Nolan in your prayers!!

Brittany 

Nolan is doing wonderful :-)  He had clinic today and so far everything has gone smoothly!  All his labs look good but his 24 hour urine protein was elevated.  That just means his chemo will be pushed back another week to allow his kidney's a rest.  He was able to get his IVIG and have some fun time with the therapy dogs :-)

Please pray for Nolan's buddy...

Brayden's MRI showed tumor progression and he will probably be starting radiation soon.   

Thank you!

Brittany

I'm so sorry I haven't updated in a while but Nolan has been doing AWESOME! 

He has been sick for so long that seeing this turnaround in him has been an answer to prayers! 

He has energy now, he's happy, talkative and just has that sparkle in his eyes again.  We don't know if it's because we reduced his everolimus (chemo) a little or if it is the IV IG infusions.  We just know we are thankful and we are really enjoying this wonderful time with him :-)

He starts Temodar (oral chemo) Sunday and will go into clinic next Wednesday for Avastin (IV Chemo) and another IV IG infusion.  Please pray that everything will go smoothly and Nolan will continue feeling so good.  

Thank you for continuing to pray for Nolan!

Brittany

This hospital stay has been a hard one for Nolan but we have had so many amazing people come to visit and cheer Nolan up!!  We got the call from Nolan's doctor yesterday that he couldn't attend camp :-( Nolan cried himself to sleep last night and it was horribly heartbreaking for me to watch...

To make matters worse he can not attend camp sunshine in the hospital. He is in a regular room on precaution/isolation so he isn't allowed to leave the room to attend.  We have had many camp sunshine visitors coming to bring Nolan activities plus some camp sunshine gear to make him feel like he is at camp.  

Today camp sunshine brought a special visitor! SPONGEBOB! Spongebob wasn't allowed in the room and Nolan couldn't leave the room but they talked and waved to each other from afar.  It was so sweet to see his smile again! 

Nolan is doing great! He's off oxygen and he's tolerating his g-tube feeds. He got his first infusion of IV IG yesterday without any problems and today he will get caught up on his chemo. If everything goes well we should go home tomorrow!! :-)

Brittany 

For those who don't know Nolan is back in the hospital :-(

He started getting a wheezy sounding cough last week and then he started running a low grade fever. When we got to the ER last night he was needing 3 liters of oxygen... So they did chest x-rays and confirmed he has pneumonia. They have him on IV antibiotic, breathing treatments every four hours and oxygen.  He seems to be responding well and we have been able to wean him down to 1 liter of oxygen. The sad news is he's missing camp sunshine :-( but Dr. Mazewski said she doesn't know why he couldn't go mid week if he continues to improve. If it doesn't work out they are doing "camp sunshine 2 u" in the hospital Monday through Thursday :-)  I'm so thankful for all these programs that bring cheer and good times to these kids that are going through so much!

Thank you for continuing to pray for Nolan!

Brittany 

good days

Nolan had a good check up despite everything going on. Thing's we have noticed lately is Nolan's posture has changed, he has a harder time walking and he has difficulty swallowing without throwing up.  We believe all this is related to the radiation he had to his upper cervical spine.  It's so disappointing to see all these things happen to his body but he seems so content and happy to just sit on the couch.  All Nolan's blood count's look great but we have been noticing Nolan getting infections on his skin, around his g-tube and the sinus infection...So Dr. Aguilera checked his IG levels and they were really low.  The remedy for this is IVIG and he will start getting those infusions sometime in July.  Hopefully that will give Nolan's immune system a boost.  He will also go in to the clinic tomorrow to get his everolimus and cortisol levels checked to see if these can be behind his fatigue and vomiting.  Please continue to keep Nolan in your prayers.  He wants to stay well and be able to go to camp sunshine at the end of this month :-)

Nolan has also come up with the idea to sell "slime green"  Rally for Nolan t-shirts.  He is so excited about this and for those that don't know "slime green" is his favorite color ;-)  All money raised will go to researching cure's for Medulloblastoma.

http://rallyfoundation.org/donate/tshirt/7343/rally_for_nolan_t-shirt

Brittany 

I can't even describe the week we had.  We were loved, cared for and left with our spirits feeling renewed.  Thank you to everyone who made sure we had an amazing week! I know it takes alot of work but we really appreciate everything!  Here's is the pictures from the week....
http://www.flickr.com/photos/pray4nolan  Enjoy :-)

This coming week Nolan has a neurology and a clinic/chemo appointment.  I'm hoping to go over nausea meds again because he is still struggling with vomiting :-(  The patch works a little but the part I'm worried about is whether Nolan is keeping his meds down.  So please be in prayer for good nausea control and good blood counts.  If anyone has tips or idea's on nausea control please leave me a note ;-)

Thank you :-)

I just wanted to give a short update on how Nolan is doing.  Besides vomiting all day everyday he is doing wonderful!  We are currently trying a kytril patch so that he gets a constant slow dose of nausea medicine in him.  Pray that this will be helpful...

Exciting news! We are headed to the beach tomorrow :-)  Nolan has been talking about the beach since December.  Go back six months early December we got the horrible news of Nolan's 3rd relapse.  The doctor's were so discouraging and I wondered if he would make it to Christmas, to see his 10th birthday and get his chance to go to the beach this summer and here we are.  I can't tell you how thankful I am! Every day is such a blessing!



Let your unfailing love surround us, Lord, for our hope is in you alone.  Psalms 33:22

mri results

Well, it's good news! Everything is stable on the MRI and Dr. Aguilera is very pleased.  We don't know if it's the radiation that is keeping everything stable, the new chemo protocol or a combination of the two.  Hopefully this mean's Nolan will have a good summer! He has his heart set on going to the beach :-)

All Nolan's blood counts were really good and he was able to get his IV chemo (avastin)  The next two weeks are going to be a little more relaxed.  I think the only appointment Nolan has is to get his g-tube changed out.  So there may be very few updates unless something happens.  No news is always good news ;-) I try to post small updates and pictures on his facebook page "pray for Nolan Blake"  It's been an easy and quick way to keep everyone updated. 

Please keep Nolan's buddy Brayden in you prayers! He didn't get good news this week...

His cancer is back and they are trying to figure out the best treatment for him.  They are at a point where he's exhausted alot of options and the fact that he has a broken leg really limits the few options he has....

Thank you for all the continued prayers and support!! 

Brittany 

MRI tomorrow

Nolan has continued to improve and today was the best! It's so good see him laughing and playing again :-)  He had his check up at the clinic on Wednesday and everything was perfect!! His blood counts were awesome and his blood pressure was normal.

Tomorrow is Nolan's MRI of the brain and spine.  I really dread these and to make things harder we probably won't get results till next week due to Nolan's doctor being out of town.
They have been trying to talk me into letting him get a spinal tap and I haven't truly felt good about this yet.  He hasn't had his spinal fluid checked in about three years. Mainly because every time they try they only get a drop or two of fluid and it wasn't worth the risk.  The risks are infection and spinal headaches but it also rules out infection and tumor cells. Please pray that we make the very best decision for Nolan and that everything will go smoothly tomorrow.  Also keep Nolan's buddy Brayden in your prayers...He had his MRI today (they haven't got the results yet) and he broke his leg really bad :-(  The poor little guy is in a lot pain and might need surgery in the morning.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7

home!

We made it home!!!

The infectious disease doctor recommended 2 weeks of oral antibiotics and he will be seen in the clinic weekly until they feel he's more stable.  Plus he will have his MRI on the 17th so they will be able to make sure his sinuses are staying clear.  

All Nolan's blood counts look great! He will be able to resume the daily oral chemo and will start oral temodar on the 14th.  Avastin (IV chemo) will have to be put on hold for another 2 weeks because of it's problem's with delaying healing.  

Nolan was all smiles again this afternoon :-)  I can't tell you how much it means to me to see him smile again!  I would say after 6 weeks of pain finally we have an answer!  Thank you all for keeping him in your prayers!! All the encouragement and support are so greatly appreciated! 

Brittany

prayer

Another pain free day today!!  He's still not wanting to get out of bed, doesn't want to talk to anyone and would prefer sleeping the day away :-(  We are not going to get concerned right now because he has every right to feel miserable.  The CT is still showing some pretty yucky sinuses!  So early in the morning he will be sedated and they will drain all that yucky stuff.  Everything is done by endoscope but I've heard it's not a very comfortable procedure and to expect him to be sore for a little while :-(

Please pray that everything will go smoothly and this will give Nolan the boost he needs to feel better!

I'm ready to see my smiling Nolan again :-)

Brittany

much better day

Today was much better! Thank goodness!

The good news is this is the first day in a really long time that Nolan didn't need any pain medication, but coming off the narcotics was not fun either.  Nolan has not wanted to talk, smile or do anything except stare at the ceiling.  The physical therapist came in this morning to work with him which was no easy task because of Nolan's grumpiness and the fact that he hasn't walked in days.  She was cracking jokes and trying to do everything she could but Nolan would not smile or talk to her :-(  I was so relieved he felt better but so sad to see Nolan not himself.  Thankfully by the end of the day I was able to get him to watch a little spongebob and I heard a small familiar giggle.  That just made my day!

For the bad and complicated news...

Nolan has repsonded really well to the antibiotics, His face looks so much better, his pain is gone but the ENT came in today to explain what the complication is.  Basically if it was just his regular sinuses affected it wouldn't be a big deal but it's his sphenoid sinuses and it's completely full!  This makes treatment so much harder! Most of the time it always comes back after finishing antibiotics and we would be right back in the same situation.  This type of infection is known for it's incredibly bad headaches and all the symptoms Nolan has been having.  So this is the plan...

Nolan will have a sinus series CT scan in the morning.  The ENT will make sure everyone is in agreement with him and Thursday they will sedate Nolan and drain the sinus.  Hopefully with this procedure and 14 more days of antibiotics Nolan will feel so much better.  The only other thing that would be holding Nolan back from coming home is that he is not eating or drinking and he is vomiting his feeds.  We think his stomach is pretty tore up from all antibiotics.  So please be in prayer that Nolan will start tolerating things in his stomach again and that we can get Nolan's sinuses cleared without any problems.

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

Brittany

slightly better day

All though today was not as productive, it was better. Nolan had absolutely no pain all morning!! Woohoo! Then we decided to take him off the pain pump and he started having pain again :-(
The good thing is he's not on a continuous drip of narcotics with lots of boluses anymore, he only gets a dose when he feels pain :-)

He had a head CT early this morning and everything appeared stable and I'm not getting a clear answer on this but no change in the sinus area. I guess I'm going to have to convince oncology to get an ENT involved. This has to clear up!

Nolan made several attempts to get up but every time he did the pain came back. I see that he "wants" to but he can't. It's all so frustrating! For a little while Nolan will look good and feel good then he goes right back to looking bad and feeling bad :-(

Please pray we will continue to see progress and be able to come up with a good plan for tomorrow!

Brittany

a visit with family

My Mom brought the kids up to see Nolan today
but he didn't do much visiting :-(
He still feels absolutely miserable. In the picture his face is all swollen but we think this is due to IV fluids and staying face down in the pillow too long. The actual swelling in his eye looks slightly better...
They added another IV antibiotic in today to really get a hold of this "infection"
If things don't look better tomorrow we will talk about doing some more imaging to see how things are looking in his sinuses. I've heard one person say orbital cellulitis and sinusitis and another doctor say, Sinusitis that is triggering migraines. All I know is I haven't ever seen Nolan look so sick :-( It just breaks my heart...

Please, please continue to pray for Nolan's pain relief and to figure out what's going on.

Thank you to all who have sent me e-mail's and messages with advice and encouragement!
Brittany

pray4nolan

It's been a pretty easy day but no changes. Nolan sleeps all the time and still has episodes of pain. His favorite thing has become hot packs and his GT pillow he keeps his head buried in. He was started on IV antibiotics this afternoon and hopefully we will notice a change soon. If he doesn't improve we will talk about Nolan getting a CT scan or moving his MRI up early next week. None of that is set in stone, just stuff we briefly discussed.

Thank you for continuing to pray for him!

Brittany

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8

back in the hospital

Sorry for not updating sooner...
Nolan's pain got really severe Wednesday night and Thursday we tried to control it but he was going through lortab like it was water. Nothing was helping at all. I took him into the ER at Scottish Rite Thursday afternoon and by that time his right eye was really swollen and had a constant stream of tears coming down. They did a CT scan, blood work and admitted him for pain control. Morphine didn't help much so they put him on a pain pump which seemed to bring the pain down from a 10 to a 5. It's been crazy today! He's been seen by oncology, neurology, the pain team and a ophthalmologist. We still don't know exactly what is going on but we are thinking cluster headaches (which are more severe than migraines and harder to treat), a really bad sinus infection or both. I really couldn't imagine a sinus infection being this bad unless it's not your average sinus infection. The CT scan was stable but his sinuses are packed all around the right eye and his right eye is swollen so it's sounding like this could be it. They started him on oral omnicef, which I'm a little upset about because with a sinus infection this severe I'm thinking bring out the IV antibiotics and lets kick this stuff! Oh well, that will be discussed tomorrow. In the meantime Nolan is miserable even with the pain meds. His pain increased a lot this afternoon but come to find out his port needle came out and he wasn't getting the pain meds :-( Now his chest is swollen and sore...

Please continue to pray! I feel like we are headed in the right direction but Nolan really needs some relief!!

Brittany

#pray4nolan

This feels never ending...

Nolan is on several different pain medicines but is still dealing with horrible head pain :-(
It is so heartbreaking to watch him in so much pain and feel I can't help him in anyway. I have no idea what to do and the doctors don't know what to do. As a mom you put band aids on boo boo's or take your child to the doctor when they are sick but you don't expect this....

We were in Atlanta most of the day discussing meds and little bit of everything. We basically have been playing a guessing game and we still are. All the doctors agree that Nolan is still in some sort of medicine type crisis. We don't know whats not agreeing with what but we are going to little by little wean him off the things we don't think he needs anymore. Also the pain team recommended acupuncture so he started that today. It would be wonderful if he can get pain relief without taking another medicine that will only cause more side effects, I'm all for it!

We need lots of prayers for Nolan! Prayers for pain relief and for his upcoming MRI and spinal tap on May 17th.

Thank you so much for all the continued prayers and support!
Brittany

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

A little improvement

Today was better!

We almost thought Nolan wouldn't get his chemo yesterday because his blood pressure shot up really high and we had a tough time getting it back down to normal. After getting some extra norvasc and some loratab for pain it improved a lot! After a 5 week delay Nolan finally received his IV chemo :-) He has thankfully been able to continue the oral chemo (temodar) with no problems.

Today Nolan was able to get through the whole day with only one dose of tylenol! That is a really big difference from before. He's still really sleepy, I think his body is still extremely exhausted from all the pain. I just couldn't even imagine....

We were able to get Nolan out of the house for a little bit today and took him to Noah's Ark (a small zoo near our house) to have a picnic and see some Monkey's. Nolan loves Monkey's :-)
I would say he was able to sit up for about 45 minutes with no problems and he had a good time but slept the rest of the day. I'm so ready to see him at 100%


As of right now I feel like I'm holding my breath...
If he continues to show improvement tomorrow I will feel the neurontin is helping.

Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:22-23

-Brittany

home

We decided it was best for Nolan to come home. Even though he still seems very sleepy he had been headache free for 24 hours and they really weren't doing anything that I couldn't do for him at home. We get home and Nolan tells me he has a headache again :-(
I'm still seeing small improvements in him and I hope it continues. As of right now we still think the everolimus drug is causing all Nolan's problems. I'm going to continue to keep a record of everything and he should go back to clinic next week so we can discuss what to do next.

Thank you for all the continued prayers!
Brittany

Today was not much better...
They had us all over the hospital. He saw the doctor, had a CT scan then saw the neurosurgeon. The CT scan was pretty much normal but the ventricles were slightly larger then the last. Dr. Reisner reprogrammed his shunt to drain a little faster. We hope this takes care of the problem but Nolan was still in a lot of pain this afternoon. He's basically been glued to the couch or the bed :-( Everything else looks wonderful! His blood counts are perfect! We just can't figure out whats causing all the pain? We discussed whether to admit him but really there isn't much they would do except observe him and Nolan wants to be home. So we have started a headache diary. Maybe we can figure out a pattern and be able to solve the problem.

The doctor decided to hold his IV chemo until he's looking and feeling better. He will go back Friday for a check up and maybe to resume chemo.
Thank you for continuing to pray for Nolan!
Brittany

headaches

Well, the headaches are back...

Nolan started acting funny and sleeping alot during the weekend. Although he wasn't feeling his best he was still able to do what he likes best at camp sunshine and climbed the rock wall :-) On the way home Sunday he started complaining that his eyes hurt and by Monday he was having headaches again. Today was pretty bad. He spent most of the day in bed up until this afternoon then he told me he wanted loratab and he was going to karate. I could tell he was miserable...
Poor guy, he came home and went straight to bed.

He has a doctor appointment in the morning. I'm not sure what his doctor is going to say about what is going on now? Please be in prayer that we can figure this out. It just doesn't make sense, he was feeling and doing so good...

Thank you!
Brittany


Pictures of camp sunshine are on Nolan's flickr account

check up

Nolan had clinic today to check blood counts and his incision and everything looks wonderful!!
Hemoglobin is 12.5, Platelets 185,000 & ANC is 6,000!! AMAZING!!! He will be able to start oral chemo (temodar) Sunday. We will attempt the decadron wean again. Please pray for no problems with this.

All in all Nolan is doing Awesome and is looking forward to family camp sunshine this weekend!!
Next clinic appointment is the 17th. He will be able to get his stitches removed and resume his IV chemo.

Thank you for praying for Nolan!

Brittany

home!

Yes, we are home!! CT scan looked really good and Nolan is continuing to improve!
He has a clinic appointment in a week to check his blood counts and then he will go back in two weeks to resume his IV chemo and have stitches removed. I know this is short but I wanted to update everyone and get some sleep. I'm exhausted...lol!

Thank you so much for continuing to keep Nolan in your prayers!!

Brittany

WOW!

After discussing everything we really felt it was best for Nolan to have the surgery and get his shunt revised. From what I understand Dr. Reisner flushed the tubing, changed the valve and clamped off Nolan's extra shunt. He has an incision on the side of his head that looks like a "c" thankfully he didn't have to go into he stomach. The stomach is such a tender spot...

I would say Nolan slept about several hours after the surgery then he popped his little head up and started drinking coke. He's been up ever since laughing, eating, coloring and watching spongebob. He is one tough dude! He will have a CT scan in the morning to make sure everything is functioning correctly then hopefully he will go home either tomorrow or Thursday.



Thank you everyone for all the encouragement and prayers!!

Brittany

A BETTER DAY

Only one headache today! Woohoo!! that would be the good news!
Nolan still seems to have difficulty sitting up for long periods of time. I took him on a few walks today in his wheelchair and he would tolerate it for about 30 minutes. I took him down to the cafeteria tonight because he wanted to pick out food that he wouldn't eat...lol ;-)
His face started turning red and his head started hurting really bad...poor guy

Nolan was able to do another shunt study today and did a wonderful job! The results were about the same as the last one. Everything is kind of inconclusive. It all comes down to Nolan might be in that small percentage of kids that there is something wrong and they won't know what it is until they surgically go in there and fix it. So he is on the schedule for surgery at about noon BUT we are all going to discuss all the details in the morning. I just don't want to do this and this not be the problem. I'm really praying for peace about this decision. I know Nolan is in God's hands and Dr. Reisner is really good at what he does and will take wonderful care of Nolan.

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

update

I was able to talk to the neurosurgeon and the plan we came up with today was to add caffeine to Nolan's diet to help with pain control and put a binder around his stomach to help control the CSF flow. Binder placed and IV caffeine was given but not a big change. I would say the caffeine gave him the want to get up and move around but when he got up all he wanted to do was lay back down..ugh! poor guy! I really don't know if the binder is helping or not?

Dr. Aguilera came in to talk to me this afternoon and she told me we are basically just masking the problem. Everything keeps coming back to the shunt. She is e-mailing Dr. Reisner (Nolan's neurosurgeon) and hoping he can come up with a plan. It's back and forth, back and forth. Nolan is just a mystery right now and I'm still praying for some answers!

I hope everyone had a wonderful Easter!

Brittany

scan results

Nolan is still feeling horrible...
Very lethargic, headaches when he sits up and vomiting.
MRI was done early this morning and Dr. Aguilera just came in and read the results to me. All the tumors are stable. I would love to hear the word clear one day but stable is awesome right now!
Nolan has a pretty severe sinus infection but that would not be why he's having these symptoms. According to the MRI he has a small fluid collection near the ventricular catheter of his shunt and his ventricles are still slightly enlarged. That means Dr. Aguilera is going to have Dr. Brahma (neuro surgeon) come in and examine Nolan and talk to me. As far as swelling in the brain Dr. Aguilera said she didn't see much and is not thinking it's a steroid issue but it can't be completely ruled out. The plan now is talk to neuro surgery and start antibiotics.

Thank you for all the continued prayers and support!

Brittany

back in the hospital :-(

Nolan's headaches started getting worse and this time they are accompanied by vomiting...
He has been re admitted in the hospital and will have an MRI of the brain tomorrow.

Please, please pray for good results!

I will update tomorrow as soon I know something.

Thank you!
Brittany

a smile

I would say about mid morning Nolan was able to sit up for about 15 minutes and go through his mail.  He's been laying down since but he is showing little steps to improvement.   He is not complaining of pain as much just that his head feels a little funny on the right side.  I know this is the 2nd update of the day but I had to share the good news!

Thank you for all the Prayers!!

home

I was shocked and surprised when I was told yesterday that Nolan would be going home. He was still very lethargic and still in pain. I went and talked to Dr. Aguilera about Nolan's steroid schedule before they released him to make sure that this medicine would kick in quickly and give him the relief he needed. I was very uneasy about him going home and the nurse had to give him loratab to get him from the bed to his wheelchair :-( By the time we got home he was in horrible pain but it was to early to give him anymore pain meds. I helped him get a nice warm bath and got him to bed hoping that he would wake up tomorrow feeling all better. Didn't happen....
He woke with a horrible headache and started vomiting. After talking to Aflac we have decided to go up on some of his pain meds and if anything gets worse he will have to go to the clinic or the ER. Apparently it can take 24 to 48 hours for the steroids to kick in :-( I really don't mean to sound down on the steroids, I know a lot of people have commented about being on them. They are just causing a lot of health problems for him and it interferes with the experimental and hopeful chemo he is on. Please be in prayer that this pain will go away. It's so horrible to watch your child be in pain and know there isn't anything you can do to fix it. I'm ready to see his smile again

Brittany

update from shunt test

Nolan passed the shunt test and did wonderful! Which is good but they are still sounding iffy and want to continue to observe him. Dr. Reisner said, Nolan's ventricles are slightly enlarged but not dangerously enlarged and his shunt is a little slow at draining but it's still draining normally.
Dr. Aguilera came in to talk to me this afternoon and talked about possibly putting Nolan back on steroids :-( I knew this was coming....
She believes he probably is still having some swelling from the radiation and the steroids could calm some of that down. We are just going to have to slowly figure all this out.

As far as how Nolan is doing, he's been sleeping mostly. He seems ok if he's laying down, if he sits up the pain comes back. So he prefers sleeping right now. Dr. Aguilera ordered a bunch of blood work to rule out low counts or infection and all that came back perfect!!

Brittany

the plan

Nolan seemed a little better yesterday afternoon. I'm sure the good pain meds helped...
This morning they woke him up at about 6:30 to take him to CT and his pain was pretty bad :-(
So here's the results...
The scan is somewhat stable but still on the fence. I'm not sure how many people understand whats going on so I will try to explain a little. Because Nolan has had brain and spinal tumors along with brain surgeries he has a lot of scarring. This has led to Nolan's body not being able to drain his spinal fluid like a normal person. In 2009 he had his first shunt put in it's pretty visible when he doesn't have much hair. The biggest part is implanted in his head and a drain goes down his neck and to his stomach. If this stops functioning for any reason it can cause an increase in pressure in the brain and a lot of headaches. We are still unsure if this is the issue so they have decided to do a special test either today or tomorrow. They will inject a dye in the valve that's in his head and let it drain down. While its draining they will take a bunch of images. Hopefully this will rule out any shunt problems. Nolan will not be sedated for this test. He's a pretty brave boy and is not usually bothered by these kind of test but I will comfort him with a chance to pick out a cool courage bead once he's done.
The doctor talked like if this is not shunt related this could possibly be something new Nolan is going to have to deal with...
I know migraines are fairly common and there are ways of controlling them so I pray that we are able to find what works for Nolan. I will try to update as soon as I find out something.

Thank you for praying for Nolan!
Brittany

#pray4nolan

Nolan's pain has just continued to increase with each day and I ended up taking him to the ER this morning.
They did a CT scan and a series of x-rays to check his shunt and it appears the ventricles in his brain are a little larger and there is some collection of fluid. I'm not completely understanding....
He was admitted to room 134 at Scottish Rite. The plan right now is pain control and observation. They will probably continue to scan him to see if his ventricles are remaining stable or getting larger. We would really like to avoid surgery if possible but we do need to find out what's causing the pain and figure out how to make him feel better.

Thank you so much for all the prayers and support!!

Brittany

continue to pray

Nolan's pain today was really bad! Nolan is on several different medications for pain but he is still having pain in the 3-5 range (on a scale from 1-10) Still he made it to karate and he is still refusing to go to the ER. Have I ever mentioned Nolan has a high tolerance to pain??? I still didn't feel very comfortable not talking to a doctor, so I made that call to the on call doctor at Aflac. We adjusted one of his med's and are hoping for a better tomorrow. If the pain doesn't seem better we will have to make that dreaded trip to the ER ....

Please continue to pray for no more pain!!

I believe this picture was one of the few smiles we saw today when his Peaches Neet Feet's were delivered!! He's been looking forward to these shoe's!! :-)

headaches are back :-(

Clinic went really good Wednesday. Nolan's counts looked fantastic and his blood pressure is back to normal. The bad thing is Nolan's headaches are back...
After discussing them with Dr. Aguilera she believes it's the decadron withdrawal. It's awful but he has to come off! He's on several different pain medication but he's still having breakthrough pain throughout the day. I just hate to see him in so much pain...
He's still determined these headaches are not going to get in his way. He has plans to be at karate graduation tomorrow and he will be going back to school Monday for the first time in about 4 1/2 months. He's like the energizer bunny! he never slows down and he never gives up!
He has such a wonderful attitude!
Please be in prayer that these horrible headaches will go away!

I know it's been too long...

Nolan is doing better with each day and was able to get some tennis in last week.  He lOVES it when he has a chance to play with coach Kenny and any of the guys! He would be at Georgia Tech everyday if I would let him...lol!

He had clinic on Friday and did really good! After talking with Dr. Aguilera we believe the headaches and vomiting are from trying to wean him off to many medications at once.  One medication called Decadron (steroid) Nolan needs to get off as soon as he can.  Strangely he's not as moody on it as he usually is but it's causing his blood pressure to be too high.  So we had to add norvasc to the mix of meds to bring those numbers down.  Also in theory she thinks the decadron mixed with the avastin (IV chemo)  is also causing the kidney problems.   Please be in prayer that as we wean him off decadron that he won't have any more problems.  He went from one milligram to a 1/2 milligram this past week and so far so good.

I just wish I could describe how good Nolan's doing.  It's just incredible! His blood counts didn't even drop after this last round of chemo.  They actually showed improvement each week!
I truly believe that the tumor's were affecting Nolan's ability to smile and now he's smiling and laughing all the time.  I just want to cherish these happy moments forever!!

This week has been a rough one for Nolan....
Since Saturday he's been having horrible headaches.  We want to celebrate him having  a good MRI and everything going well but why the horrible headaches? He had clinic today and they went ahead and did blood cultures and gave him some IV rocephin just in case he has a sinus infection.  I was almost positive he needed blood,  but Nolan's blood counts were incredible! His hemoglobin was 13, the highest we've seen in a long time! His platelet's were about 215,000 and his ANC was wonderful too!  Anyway, counts did not explain his problems.
He couldn't get avastin (IV chemo) because protein in his urine is too high
again :-(
Here we go with another 24 hour urine test....
Nolan did seem to perk up by the time we got home and was able to get karate in but soon after  he was in pain again.  The pain seems to come and go and sometimes he has vomiting with it but not always.  (I'm thinking the lortab might be what's causing the vomiting.) The medical staff does not seem all that concerned?
Please be in prayer that we can find out what's going on.

final results of the MRI

We have good things and bad things happening again.  For about 2 weeks Nolan has been falling a lot and having a lot of problems with his arms and legs shaking without his control.   Everything pointed to problems with tumors.  I don't know why I haven't mentioned it until now.  I guess a part of me was worried and I didn't want everyone else to be worried.  Today Nolan went in for labs and for Dr. Aguilera to go over the final results with me.  I do believe everyone is really surprised on how well Nolan responded to radiation.  Everything looks so much better and we expect it to continue to improve.  So why these weird problems?  We think his spinal cord is swelling from the radiation :-(
He will start back on decadron (steroid to reduce swelling) tomorrow...
Yeah, we are disappointed but it's so hard to see him this way and we don't want this to be permanent.
This means a flip flop in his medicine schedule because everolimus and decadron don't mix well.  We are really hoping that the decadron won't mess with his everolimus levels.  I don't know if I have ever mentioned before but they test his blood about once a month to keep an eye on the level of everolimus Nolan has in his body.  There is supposed to be a gradual increase and a good majority of the time patients have a hard time reaching good enough levels to be effective. The good news about Nolan's everolimus is his levels shot right up without any problems :-)  We are excited about this!!
Oh and his blood counts look wonderful!!!!!!!!!!!!!!!!!!!!!!!

Prayer request are for these symptoms to go away and for Nolan to maintain a good everolimus level.

Thank you all!

MRI preliminary results

Nolan with his radiation oncologist Dr. Natia

Well, I have some good news!! Everything is still preliminary, the doctors will look over all the scans and compare them to the last one but everything has improved.  The main tumor that we were most concerned about (the one that was located in his upper spine) has shrunk by approximately 50% and there was three small tumors in his brain that looked stable or improved.  Dr. Natia's said, she is very pleased and the radiation will continue to work over months to continue to shrink the tumors.  I can't tell you how relieved we all are.  I still need to talk to Dr. Aguilera, Nolan did a research study on diffusion of the spine.  We are all hoping that this will be beneficial in seeing things that are normally hard to see on MRI's, Dr. Aguilera is also hoping that it will help her in being able to define what is scar tissue, tumor and what is radiation changes.  Thank you so much for praying so hard for my little boy!
I will update as soon as I have more details.