June 2014 Update – Two year milestone with Glioblastoma!

I’ve been taking a photo of Mike at this spot at Duke every visit for about the last year.  This was the April visit.

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The month of May, Mike was barely able to get out of bed or leave the house due to pain, fatigue, weakness, and nausea.  On May 4th we were planning on going to the Race for Hope in DC, but we were unable to get out of town because he wasn’t doing well.  We were worried that there might have been a drastic change with his tumor, so May 15th he had an MRI (two weeks ahead of schedule, also happened to be my birthday.)  That MRI didn’t show any new concern.

We had lunch before the MRI and Kayla took a few pictures while we were waiting. Then Kayla and I had a piece of cheesecake since it was my birthday.

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Below are MRI photos from different angles.

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They give him an IV in his arm and insert dye.  The dye travels to his brain, and this is a “contrast” MRI.  The areas that “light up” are of concern.  That’s my very inexperienced short explanation.

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On Saturday, May 24th he was in the ER and a CT scan showed a sinus infection.  His blood pressure was around 90/60 for about a week straight, he was barely eating, drinking or staying awake for any period of time. He had gotten IV fluids several times that week just to be sure he was not dehydrated. There were days that I would wake him up for 20 minutes to eat each meal and that was all he was up.

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May 27th I asked the local doctor about stopping chemo and we made the decision to try to improve Mike’s quality of life and stop the chemo.  At that point, Mike was so sick that we just wanted to have some good days.  When I was talking to Mike about the options before going to Duke, Mike’s words were “I want my summer.”

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But at the same time, he doesn’t want to throw in the towel, so we are continuing Avastin.  I met with a hospice coordinator On May 1st and she assured me that hospice is something that can step in any given day that I need them, so its not a decision that we have to plan and make ahead of time.  The day it comes is when I will make that decision.  We did get a wheelchair and 3 in one bedside commode delivered.  The wheelchair has really come in handy for outings with crowds, but he doesn’t need it around the house.

On May 30th, Mike was out of bed again and functioning.  I was relieved that we would be able to salvage some good times.  After such a rough month, I was a little afraid he wouldn’t bounce back.

I sat down with the kids and let them know that we were making the choice to quit chemo because of how he was unable to enjoy any days of life in the last few months. (maybe longer, its hard to remember back, it all becomes a blur)  I told them that we were choosing to claim back some quality of life and hopefully salvage the summer.  I told them that this usually means less quantity of life, because even on chemo, there is no cure for this.  I explained to them that this choice pretty much means we were going to choose to have less days, but really good days verses what Mike was experiencing.  They saw him in bed and sick every single day, so they understood.

This photo was taken June 4th at Duke.

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At Duke, Dr Peters agreed.  When we were talking to the nurse practitioner, I gave her a heads up that we wanted to talk about it and she said that Dr Peters was already saying “He’s been on Etoposide a long time; a full year.”  The nurse practitioner said that most people don’t make it a whole year on Etoposide, either due to regrowth, or their body just not being able to handle the poison for that long.  Dr Peters said he felt so bad for so long on the chemo, and that he really seemed to be feeling better and that she didn’t want to put him back on chemo either.

Mike and I had a great time away for the Duke appointment.  He was his silly self, impossible to take a selfie with.

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The month of June has been an amazing improvement. There have been some obstacles that have concerned us, but we are thankful for making some new awesome memories!

While the big kids were still in school, we took Kenzie out for a day of ice cream, go karts and bumper boats.

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Maw Maw (Mike’s step mom) came to visit, so we went back another day with her and the big kids and also did some mini golf.

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We even went to a friends house for dinner one night without the kids!

 

 

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Mike’s Fathers Day gift was a “spa in a box.”  This was the perfect find for him to enjoy the feel of a hot tub without spending a lot of money and making a big commitment to a hot tub.

 

 

 

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A huge morale booster for me was being given season passes and meal passes for Ocean Breeze.  A thankful shout out to Ocean Breeze and the Quality of Life Foundation for giving us an opportunity to spend time together this summer doing something out of the house!  I had been in a down mood but this really excited me.  We have already been there 3 times.  🙂  Mike enjoys being out of the house and watching the kids laugh and smile.

 

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I had it in the back of my mind to visit my sister when her family went on vacation to a house in the Outer Banks, but I was unable to make any plans not knowing how Mike would feel.  At the last minute, we made the trip for an overnight stay!!!  It was so refreshing.  Kayla is in Florida, so she wasn’t with us.

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As you can see, we have definitely regained some quality of life and taken back our summer from brain cancer so far!  I will cherish every moment as best I can and be thankful.  Looking back at May, its unbelievable how much better Mike feels off of chemo.  Life is still a blur, so I’m sure to capture these memories, even if with only my iphone like these.  I went through a time when I didn’t take any photos if I didn’t have my expensive camera out. I’m realizing that any photo is priceless.

I did get out the nice camera once this month with Kenzie and Cameron…

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One response to “June 2014 Update – Two year milestone with Glioblastoma!

  • Betty Fajardo

    Thank you!!! Hugs for all of you. I have read your site and I want to commend you on the way you have handled this situation. I am praying for your family. My uncle was recently diagnosed with GBM stage 4 brain cancer. I found comfort in reading your story. I could relate because he too is a father with a young family. As a family member it helped me to see what my aunt is going through and ways to help. Praying for all of you. Praying you continue to have strength for this journey. God bless you all.

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