Glioblastoma update

 

I have been really struggling to find time to do anything, especially put some thoughts together to update the blog.  Mike had his appt on August 27th, and the doctor expressed her frustration with the newest chemo not shrinking the tumor.  Its still there, and its still the same size.  So frustrating.  We were hoping the chemo would do something.  After a couple day break due to low platelets, Mike finished out that round of Etoposide at 100mg each night instead of alternating nights of 50mg/100mg.  He’s also starting the next round of 100mg daily for 21 days.  I try to stay positive, so I do post more about the positive days and just kinda get through the bad days quietly, but yesterday was a rough one. He’s unsteady and dazed often. He fell twice last night, so that was pretty scary.  He was ok, he just lost his balance. This morning he seems to be doing better. I’m very proud of our little one. We have practiced what she should do if Daddy has a seizure or falls, and she ran to me and said Daddy fell and was laying on the floor.  So that’s an insight of my reality right now.  We did have a great date night on Friday with some friends, and he had a few visits from his friends and family this past couple of months.  Its just random whether he is going to feel ok or not day to day.  I am very excited that the Ft Eustis Army base donated 5 Busch Gardens tickets and a night at Great Wolf Lodge to our family! I don’t know if Mike will want to try to go to Busch Gardens, but the kids have had a really rough year so I will be sure to take them.  Great Wolf Lodge is the perfect getaway for us because Mike can lay in bed and I can take the kids to have some fun but still be able to check on him hourly and he still gets to see their excitement.  I really hope to treat him to a spa day again this time.  He really enjoyed that.  We went to Williamsburg for a day at Water Country, but Mike ended up not feeling well and spent the day in the hotel room in bed.  I did take the kids to the waterpark anyways, we just cut the day short and went back to the hotel to enjoy half of the day with Mike and made some dinner.  Its really hard to plan anything these days because we don’t know day to day how he will feel, and we don’t know MRI to MRI what to expect for long term plans.  Its all just hard in general.  We have started the new school year, and the kids are doing well so far in middle school, high school, and preschool.  I have totally quit doing photography so that I can focus on the family. I don’t regret it at all, I really need to put all of my energy into them right now.

This is a photo I took Friday night on our way out on a date night.

Date Night!

Mike was giving Kenzie a quick fishing lesson in the backyard lake before we went out to try a new fishing spot.

Fishing Lesson with Daddy

Mike’s Dad and step mom came for a visit from La.

47738_10200537379420274_1779055845_n

We went out to Northwest River Park for an evening of fishing.

536208_10200734606390825_900161551_n

Our high schooler!

1002867_10200716093928025_223496793_n

Another photo of Mike with his Dad and step mom during their visit.  We got out and did quite a bit of touring while they were here.  It was a great week.

1093985_10200533445241922_1606733892_o

Mike and his siblings at a Hank Williams Jr concert here in Va!  They all met here from La, Tx, and Ok for a sibling weekend, and I’m so glad they did!!

1173669_10200697896433099_2099859436_n

We were headed out for Mike’s last MRI and I wanted to snap a picture of Kenzie and she ran over to Mike and hugged his leg and they both smiled.

1174703_10200650981020243_332447196_n

Our guy is doing well in his second year of middle school.  Both of the older kids are in honors classes and we are so proud of them.

1236435_10200716094208032_1916360787_n

Oh goodness…I cannot begin to tell you how excited she is to be in preschool.  Her first couple of weeks went great.  On Thursday when I went to pick her up, she ran to her teacher and said “Guess what?!?!  I will go home, go to sleep, and wake up and I get to come back to preschool!!!”

1240135_10200716093768021_1160346271_n

The MRI picture shows the black empty cavity on the right side of the photo where the first brain tumor was removed, and the white above it is the new tumor and swelling.  This is the MRI from the August 27th appt, and the next one will be done by October 8th.

1269188_10200681009650940_1024873328_o


2 responses to “Glioblastoma update

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: