MRI results

Dr. Aguilera called me this evening with the results of Nolan's MRI.  Everything appears stable...phew! For those who don't know much about MRI's and brain tumors, Stable basically means no shrinkage and no growth.  We were really hoping to see some shrinkage of the tumors but she assured me everything looks good. We will keep on with the metronomic chemotherapy and do another MRI in 2 months.   Nolan has an appointment Friday for his chemo and she will go over more details with me about the MRI. If anything new comes up I will be sure to post it.

After the MRI we picked up Nolan's cool new "slime green" hearing aid molds.  His favorite color :-)

A quick prayer request, Dr. Aguilera asked if I would allow Nolan's tumor tissue to be sent to St. Jude's and tested to see if he has the sonic hedgehog pathway.  If Nolan has the pathway, it would give us more hope for a cure.  Please, please, please be in prayer that he has this pathway.  We don't have a lot of options to fall back on.

If you could please help us with our Cure Childhood cancer fund raiser. If everyone could just donate $5 it could make a big difference in a lot of little children's lives. Here's a few statistics...

http://www.firstgiving.com/fundraiser/nolanblake/2012-cures-kids-conquer-cancer-one-day-at-a-time

and if you would like a Rally for Nolan t-shirt, here's the link.  All proceeds from the t-shirt sales goes specifically to research medulloblastoma.
http://rallyfoundation.org/index.php/kids/rally_kid_nolan_tshirt_fundraiser

Thank you for supporting Nolan,

A day at the race track/MRI

Nolan had an AWESOME weekend at the race track!!!  Carl Edwards came out of his trailer wearing a signed subway hat, took it off his head and placed it on Nolan.  They chatted a while, I think Nolan was at a loss for words but quickly warmed up ;-)  Carl asked Nolan if he wanted to check out his car in the garage.  Nolan's eye's just lit up :-) Carl walked him down to the garages and started pointing out how everything works and asked Nolan if he would like to sit in his car?  Nolan was so excited!!! Carl picked him up and placed him in the race car! It was just a dream for Nolan! His pit crew were jacking up the car, changing the tires and doing all that cool guy stuff!  Thank you to our sweet dear friend that made this possible.  Nolan is still in awe of what he got to do...you can check out the picture on the flickr link: http://www.flickr.com/photos/pray4nolan

We would appreciate as many prayers as possible.  Nolan has a MRI very early in the morning.  If I get any results I will post them as soon as I can.  There is a slight possibility we will have to wait until Friday's appointment with Dr. Aguilera. 

Don't forget, September is Childhood Cancer Awareness Month and we are raising money for Cure Childhood Cancer and the Rally Foundation.

http://www.firstgiving.com/fundraiser/nolanblake/2012-cures-kids-conquer-cancer-one-day-at-a-time

This is our t-shirt fundraiser link.  All money raised from the t-shirt sales goes specifically for Medulloblastoma research
http://rallyfoundation.org/index.php/kids/rally_kid_nolan_tshirt_fundraiser

Super Nolan

 By the looks of this picture you can tell Nolan is doing SUPER! He just amazes me!  I'm seeing his feisty personality come back :-)  He will be finishing up 21 days of cytoxan on Tuesday and starting his Etoposide on Wednesday.  His blood counts have skyrocketed to the point of it being unexplainable.  The doctors are saying, if he does this well with his etoposide they may talk about raising the dose.  It's lovely how when he starts doing wonderful it's too good to be true, so let increase the dose...lol! (I prefer to laugh not cry.)  We are just enjoying every blessed moment!

Nolan happily holding up his beads of courage as we were leaving the clinic Friday.  He has started his 17th necklace!!!!  So proud of him!

September is childhood cancer awareness month and it will be here before you know it.  We will be raising money for Cure Childhood Cancer and The Rally Foundation.  We wanted to twist things and make them a little fun.  For Cure we want you to join Nolan's Facebook page, post a picture of you or someone you know wearing a cap, and make a donation to Nolan's First Giving Page.  All money will go to researching Childhood cancer.  We are hoping to see about 500 hats and Nolan is excited ;-) Here's the links...

                                  https://www.facebook.com/CapsForACureNolanBlake

http://www.firstgiving.com/fundraiser/nolanblake/2012-cures-kids-conquer-cancer-one-day-at-a-time

You are more thank welcome to re-post, tweet or Facebook these links. The more awareness we can raise the better ;-)

I will post info on the Rally for Nolan t-shirts as soon as I have it set up.  If you have ordered a Rally for Nolan t-shirt in the past and have not received it, please e-mail me at britt62084@bellsouth.net


Please remember to be in prayer for Nolan's MRI coming up on September 4th.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  Philippians 4:6

Thank you!

1st week of school

1st week of school was Awesome!!

 Everyone loves their teachers and is adjusting well to their new schedule :-)  

All the kids with their new teachers 

Ready to catch the bus on the first morning

All Smiles! A sign of a good first day....

Update on Nolan:
Nolan has been doing SUPER!!  Ever since starting the thyroid medication he's had so much more energy.  It's just been amazing to see the difference!  All in all we've been doing good.  Nolan's looking a little pale right now... More than likely he needs blood counts checked this evening and Friday he goes in the clinic for a chemo infusion.

Prayer request:
~for good blood counts
~MRI on September 4th.  The MRI will be a routine 3 month check up of the brain and spine.  Were hoping for stability or shrinkage of all the tumors.

Thank you!

Finally feel like we are back in the swing of things! Nolan was able to get his IV chemo today and everything went well.  Shouldn't have to go back for another two weeks :-) At least from the oncology stand point.  We still have a GI and Audiology appointment next week.

Dr. Aguilera called me yesterday with Nolan's endocrinology test results.  Everything looked good except his thyroid.  Basically it isn't functioning normally anymore.  This is more than likely a results of Nolan's radiation he had 2 1/2 years ago. Now that we know, Nolan can get started on medication and hopefully get to feeling better soon.

Rylea and Nolan playing Jenga in the clinic today

changes

So far, so good!  Can't believe we were able to make it to the clinic by 8am, considering how bad the traffic is/was in Atlanta...lol :-)  Nolan's blood counts are beautiful!  ANC is 2,000 right where it needs to be.  Platelets are 238,000 and hemoglobin is 12.9! Woohooooo! Go Nolan!  well, that's the good news.  Bad news is Nolan's electrolytes were a little messed up again and he was dehydrated.  Dr. Aguilera and I talked about it and decided it's best to give Nolan's a couple more day for his stomach to heal.  He will get IV chemo Friday, but will start oral chemo tonight at a 50% reduced rate.  It's just obvious Nolan is getting more chemo than his body will tolerate and for this to be effective we need consistency. Hopefully the reduced rate will give his body the rest it needs for Nolan to build back his strength. Everything else looks good Dr. Aguilera is re-checking his IgG levels and cortisol levels.(We should get these results this week.)  As far as today goes Nolan is getting fluids and once done they will re-check his blood levels and see if they are back to normal.  GI has recommended Nolan go back on the really hypoallergenic EleCare feeds at night and some pedialyte during the day to keep him hydrated. We hope this will be easier on his stomach and he will be able to gain some weight back...

Exciting news is Nolan will start 3rd grade Monday.  He can't wait to see his friends and he is looking forward to another wonderful year at Crescent.  Dr. Aguilera is working with us on this, if his ANC drops too much we will just give his immune system a boost with some neupogen shots.  We have a a whole team of people looking after him and everyone at school knows and loves hims :-)

Thank you for all the support and prayers!

Nolan is slowly improving.  We were really hoping he would be able to resume all of his chemo today.  His hemoglobin was 12.2 and his platelets were 225,000.  Which are AWESOME, but his ANC was 960.  It really needs to be above 1,000.  They went back and forth about about whether to start but Nolan hasn't ate or drank in 10 days and he is still not tolerating any feeds.  Basically he's been living off of pedialyte that runs through his g-tube.  Of course this has caused his weight to drop and the strong antibiotics he's been on has really caused a lot of stomach problems.  Dr. McDonald said if we were to start chemo right now, is like asking for another hospital admission...  Nolan has a follow up Wednesday with Dr. Aguilera.  We are hoping his blood counts and everything else will be better by then, if not we will have to come up with another plan.

Thank you for keeping us in your prayers,