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