With the news of the tumor recurrence, we feel an urgency to create some really special memories with the kids.

One thing I’ve learned from other families who have faced this diagnosis is to embrace each day that we have.  We haven’t done a really good job of that this past year.  We’ve spent a lot of days mourning the changes in our lives.  We have tried, and have stayed as positive as we could in each moment. But we need to do better.  We need to figure out how to escape the stress and enjoy moments with our kids instead of letting the stress and uncertainty get in the way of that.

We know that coming up in October we will have to pay $3000, and it has really been heavy on my heart to spend quality time with the kids and create memories while getting away from the stresses we face daily.  Funds have been raised at the following link.  I am so thankful for each person that donated.  We had a couple of donated amounts that blew me away and made me feel a little bit guilty at the people’s sacrifices, and I appreciate each and every person that donated, even the littlest amount.  Little by little a lot can be done.  I appreciate each and every sacrifice that was made to donate to our family.

With these donations coming it, I also started to sell some photography equipment so that I’d feel like I was doing my part.  Its a great feeling to know that others are partnering up with us financially.


July 2nd we saw the drs at Duke.  July 3rd I took the family on a surprise get a way to Great Wolf Lodge for two nights.  We truly were able to take a break from the cancer.  There was so much do to for the whole family.  This was probably the first time we ever went somewhere that each of the kids and Mike all enjoyed. Its hard to please a 13 year old girl, 12 year old boy, and 4 year old girl all at the same place.  I wished we could have stayed longer because it was such a great escape from reality.  Mike is always in pain (back, neck, shoulders, legs, wrist, ankles and feet) so I sent him into the spa once each day.  One day he had a deep tissue massage and the next day a reflexology foot massage that was supposed to increase circulation.  It was a great balance of allowing him to spend time with the kids and see them having a blast, but then also getting away for some quiet time to himself and to be pampered.  I didn’t take a lot of pictures because I really didn’t want the burden of carrying a camera around, but I did take a picture of such a special moment with Kenzie and Mike at story time and a couple of other random pictures.  We made the best memories. It was priceless.Image


4 responses to “

  • Mary Simpson

    So sorry you are on the GBM journey. My husband is a 5 year survivor. He was diagnosed in April 2008. His surgeon removed about 45% of the tumor. Treatment is at Md Anderson. There are highs and lows along the way. We just had an mri and the tumor is still there, it is just not growing. Stay strong but it is okay to break down along the way. Take care of yourself and don’t feel guilty for it. I need to take my own advice. Much peace to you and your family.


  • MaryAnn

    I can so relate to you and your blog, I just found it today. My husband had his first seizure in March of 2009 suggesting a GBM however after and inconclusive Biopsy he was not officially diagnosed till July 2010 after a second Biopsy confirmed Grade 4 GBM left temporal lobe. After being told it was inoperable by several Dr’s we found a Dr. at Sloan Kettering. He had a resection of 98 percent, the usual radiation and temodar to follow. Now in February 2013 there were changes in his MRI, thought to be necrosis and as a precaution he was put on TEMODAR for the past 5 months with very little change in his MRI. He had a scan in June, still they said necrosis. We just had another scan last Friday 7/24, and now the area has almost doubled in size, so now they say it is tumor growth. Our heads are also spinning, as I am so sure you can relate. He is being treated at Memorial Sloan Kettering in NYC. So its not as if there are a lot of better hospital to choose from. This disease seems to have a mind of its own. I just can not figure out how more is not being done in research and why it is so slow when is disease seems to be popping up more and more. I have heard that Duke is experimenting with the polo vaccine and others with injections of viruses which can penetrate the blood brain barrier. I too have placed my faith in God. But it still does not make the days easier. No matter how hard we try, some how its always there. We laugh a lot, and try to stay as positive as possible. But its so hard some days. I just find so many people who really don’t get it. And I hate the ” I am so sorry” That is not what we need to hear. We need you to be positive have faith, and tell us miracles happen everyday because that is what we believe. The hardest part of me as a wife is seeing how much he wants to live, how positive his attitude is how hard he fights and how little he is getting in return. We owe this fighters a chance, more needs to be done. I know it takes a toll on my children, even though they are both adults in here 20’s. Your Dad is your Dad is your Dad. And what a great Dad he is. I have resigned myself that for right now there is no cure. But it will come, so for now we have to hold on and try to keep this monster in at bay what ever way we can. We have to remind ourselves that hey are here with us now, we can not get to far a head of ourselves. I have to remind myself of that each and every morning before I get up… and sometimes its really hard to stay positive I know. All things are possible in God’s name. Hope and Faith is our best friend. I will try to s as I know you will. You, your husband and family are in my prayers. Please remember mine in yours you can never have to many. 🙂 MaryAnn

  • Gwen

    I will be believing with all of you. I know that God seems so far away when we are going through trials but just keep hope and faith alive all of you. Don’t take any day for granted because each day is a blessing to have each member here. Prayers and love being sent your way. Maryann, I love your honesty at how you are feeling. Keep it real.

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