It has been quite a rough and crazy week! Nolan went in the clinic Thursday for a routine visit and chemo infusion and it turned into so much more. In triage they realized his oxygen was really low and he was rushed to the back. It really scared me on how serious they were taking this. Nolan's had oxygen problems for so long....

They did numerous blood test and we found out he had methemoglobinemia. You can google it, to hard to explain! lol

All this was caused by the dapsone he's been on forever! The remedy for this was an infusion of methylene blue (it's really blue...lol) the results were pretty quick but it got worse before it got better. As soon as the infusion was complete his blood pressure spiked, he started vomiting and his oxygen dropped to 77. Everything seemed to level it self out within an hour and he got an infusion of rocephin and a bolus of fluids. Apparently he has an infection going on somewhere in his body, just not sure where. What's amazing is, all this was done outpatient! They know Nolan's rule, no hospital unless absolutely needed! lol

He did have to go back today and so far everything looks good. He still has not received his avastin infusion. The protein in his urine is still too high. He will do a 24 hour urine test next week to get a better idea of what's going on. If it looks better he will be able to get his avastin, if not he will continue the break and possibly have more time In between infusions in the future. Please be in prayer for good results. 

Thank you to everyone who wished Nolan a happy birthday! It really made his day  :-)

Happy 10th Birthday Sweet, Awesome Nolan!!

I know I've gotten behind and I was only able to update caringbridge yesterday.

Nolan woke up yesterday not feeling well and having low oxygen saturations. He had a CBC done and found out his blood counts were pretty low and he needed a transfusion.  We didn't have time to do it yesterday so he was put on the schedule for today.  Poor guy was up most of the night with terrible headaches and he was showing signs of dehydration.  When we went in today he was type and crossed and they had a bit of trouble finding the right amount of blood.  We needed to make sure he got enough because his counts were continuing to drop pretty quickly (his hemoglobin went from 8.9 yesterday to 7.7 today).  I could tell Dr. Aguilera was concerned she came in two times to check on him.  We were at the clinic from 9:30 till 5:30 and he slept the entire time.  He got a bolus of fluids and two units of blood.  He seems to have perked up a bit but still slept all the way home and climbed in bed as soon as he was able.

So instructions are no more everolimus until his counts recover and he probably won't be getting Avastin Thursday.  Dr. Aguilera is thinking his counts could drop some more. Here we go again...
I also have to push the fluids.  His urine test are continuing to show high protein (not good) This is a side effect of the avastin and dehydration doesn't help.  Nolan just is not able to drink enough during the day and we can only get so much in him overnight.  This means Nolan is going to have to go back to wearing a back pack with fluids/feeds.  He's not going to be happy about this, but I know he would rather stay out of the hospital.  Wednesday is his Birthday! He will be the big "10" :-)  He is so excited and I want him to feel good and really be able to enjoy his day :-)

Thank you for all the prayers and support!!

Nolan and Simon playing headbands game while in clinic yesterday

Clinic went really good yesterday!  All his blood work looked good, Nolan looks good and we are right on track with everything.  He was able to get his IV chemo yesterday but we are starting to have a few issues with it.  He's been on avastin (IV chemo) for almost 2 years now with no problems and Dr. Aguilera just made the comment on how well Nolan has handled it.  I guess we spoke to soon :-/
Oh well, he will go back next week for more testing.  Everolimus (oral chemo) is going well, only symptoms we see so far are mouth sores :-(  He doesn't seem to act like they hurt, but we started him on biotene mouth wash hoping that will clear it up.  Temodar (oral chemo #2) was started tonight.  So far, so good! In the past this chemo has caused Nolan to have a lot of nausea and vomiting.  So please pray we won't have any of these problems.  He's on a mixture of Nausea drugs that will hopefully help with this.

Important date to remember is MRI has been scheduled for February 15th.  I'm counting down the days! I'm so ready for this!  He seems to be improving though. His balance and speech are continuing to improve and he is really looking forward to going snow tubing this weekend.  Special thank you to Radiation Vacation for those awesome snow tickets :-)

Nolan with his Beads Of Courage!

Clinic went good today...Dr. Aguilera changed some stuff on us though :-/

Not sure how I feel about this yet.  Instead of Nolan getting weekly carboplatin (chemo) infusions he will take 5 days of oral temodar (chemo) a month.  Sounds nice, I think.  Difference would be, Nolan's last dose of carboplatin was almost 3 years ago, his last dose of temodar was 6 months ago.  If it didn't work back then, will it work now? (that was my question) Her response was, "sometimes used in different combinations."  All we can do is trust and pray! He will still continue Avastin infusions bi-weekly and he starts Everolimus (new chemo medication) tonight.

His examination went well.  I believe Dr. Aguilera is still impressed that Nolan didn't have more symptoms from the radiation.  She just warned me that it can stay in his body for a while and he can have some delayed symptoms.  The only thing we can see right now is his right eye does not seem to be tracking like his left eye.  Hopefully it will just be temporary.

Thank you for all the prayers, love and support!
Happy New year!