Nolan has made amazing progress! No more seizures!!! Woohoo!! :-) his speech is almost completely back to normal and he's getting noticeably stronger. The EEG is off and the drain is supposed to come off This afternoon. He's still having a little bit of trouble keeping all his electrolytes up. His magnesium, sodium, phosphorus & calcium are all low or border line low.  This has been a continuous problem since he got the cytoxan back in December. Hopefully over time it will correct itself but in the meantime we will just use supplements. He's still in the ICU but we are working on getting his sodium from an iv drip to a g-tube med.  Once that's done and he's holding his levels good he can move to a regular room :-)

Thank you for all the continued prayers!!

Brittany 

Nolan was up at 3am this morning asking for juice :-)

His sodium is back to normal and he's trying to say things but his speech is still very slurred. He is also showing more weakness on the left side of his body. He hit the right side of his head and had surgery on the right side so it looks like it affected his left side.  Some of the doctors want to do an MRI but I think we are going to hold Off right now. We don't want him under any sedation right now unless it's absolutely necessary. He's still having some seizures...

He had about 15 yesterday and 6 overnight.  The neurologist came in and made a recommendation for a fairly new seizure med that has been really helpful in kids with brain tumors so I think we are going to give it a try today. 

Thank you for all the prayers!! 

Brittany 

The last few days have been rough for Nolan...

He was doing so good after surgery that they were going to move him to a regular room but before that happened Nolan had a set back :-(   He had woke up yesterday morning fine and talking but was in pain so the nurse gave him some morphine and he took a nap.  When he woke up he could no longer talk, his teeth were clenched and he was having a lot of facial twitching.  I knew that he was having seizures... He had a ct scan after the episodes which showed the ventricles in his brain are still a little large.  The doctor wants him sitting up in bed to hopefully help with the drainage.  He will have another ct in the morning to make sure this Is looking better.  Please be in prayer for a good scan! I really don't want him to have to have another surgery.  The other problem he has going on is when Nolan went into surgery he had a normal sodium of 141 the day after it went down to 127 which triggered the seizures.  He's getting continuous EEG monitoring, they have gave him a bolus of two different seizure meds and have him on a slow drip of sodium to hopefully get the seizures under control again.  There is talk of doing an MRI tomorrow if things don't improve....

Thank you for all the continued prayers!!

Brittany 

Nolan has been very sleepy the past few days and I related to the fact he has just been laying around a lot lately.  so when yesterday was beautiful and sunny I encouraged him to get outside and walk to the end of the driveway and back with his walker.  All the kids were outside and Nolan was really enjoying being outside till all of a sudden his legs gave away and he fell backwards hitting his head on the pavement. I quickly rushed him to the ER where they did a CT scan of his head and realized he had a brain bleed. On top of that apparently his shunt had started malfunctioning sometime in the past week or two.  Our biggest concern was the low platelets could cause things to be even more serious but after test were run we realized Nolan's platelets went from 52,000 on Tuesday to 163,000. Talk about a big recovery!! The doctors thought it was a mistake so they ran it again but it was real :-)  He did have surgery last night and the neurosurgeon was able to remove a pretty large blood clot, he replaced the valve on Nolan's shunt and put in an external drain to remove the excess blood off of his brain.  The whole surgery went really good! The anesthesiologist prepared me for him to come out on a breathing tube because of his recent case of pneumonia but Nolan came out breathing on his own and talking.  He's doing super!! His CT scan this morning was much better! So hopefully the drain will come out in the next day or two. He will stay in picu at least one more night as a precaution and then he should be able to move to a regular room. 

Thank you for all the continued prayers!!

Brittany 

Nolan had a wonderful clinic visit today! All his bloodwork looks great! The only thing the topotecan (chemo) seems to have affected is his platelets. They were 262,000 a week ago and now they are 62,000. No need for transfusion right now but will keep an eye on it with some follow up labs next week.

The doctor and I talked a little about chemo and we may add two more drugs eventually but first we have to get Nolan weaned off of decadron because it doesn't work well with one of the chemo's.  He was started on decadron (steroid) In the hospital to help with inflammation in the lungs and anything that could be going on in the brain.  So far he has done great with the decadron weaning and it will probably be another 2-3 weeks before he's completely off.  One of the drugs we discussed is avastin which he's done for years and has been off of for a couple of months.  The other is an oral pill that I don't know much about yet.... 

Please be in prayer that the decadron weaning goes smoothly and he is able to start these new chemo's. I always feel the chemo works better in combinations. I could be wrong but that's what's he's always done.... 

Thank you for all the birthday wishes!! Nolan had an awesome day :-)

Brittany 

Nolan finally made it home from the hospital this past Saturday.  I know I should have updated but things have been chaotic.  Nolan is doing good but since he's been in bed for the past month he has totally lost his ability to walk unassisted.  Nolan doesn't seem to upset at all! He just tells me he's going to work on getting stronger everyday.  He's as happy as can be no matter what situation he's in. I feel so blessed that he has such a good attitude :-)  In the meantime since he can't climb stairs we have had to move him into my Mom's house.  It's been hard to be apart from him at night but my Mom lives right in front of us and I know he's safe and well cared for.  Nolan seems to take the move just as well as everything else and he's ok with it. We are happy to be home and so thankful! Nolan is just a miracle.  The only way I can explain how he came through what he did was God having his hand on him.  WOW! The power of prayer is amazing!!!

Nolan will have clinic Friday for his hospital follow up and to check all his labs.  His phosphorus and Magnesium have continued to stay low but we are giving him supplements in hopes everything will look good when he goes in Friday.  We also probably discuss whats next with the chemo.  Should we continue what we are doing or look into other treatments.  Not sure yet but praying we will make the right decisions.

Tomorrow is a big day for Nolan!! He will be 11 years old!! Please wish him a Happy Birthday  and I will read all the messages to him :-) :-)

Thank you all for the wonderful love and support!!

Brittany

Nolan really enjoyed getting to hold a little bunny named Thumper in the garden at Scottish rite yesterday. He loved every minute of it :-)

Today is the last day of chemo for this round!! Woohoo!!

We are getting a bi pap machine delivered to the hospital today and tonight they will work on teaching me how to use it and make sure he tolerates it ok. If everything goes good he will be able to go home tomorrow!! So excited!!  In a few weeks they may do a sleep study to see if he will continue to need the bi pap.  He's doing so good I have a hard time believing he will need it for long :-)

Jesus looked at them and said, "with man this is impossible, but with God all things are possible." 

Matthew 19:26

-Brittany