The Hardest Thing to Say

 

This is my little boy singing one of our family's favorite songs.  Lately, it has become more meaningful because it is exactly how we are all feeling about Glenn.

For the last few days, Mom and I have been discussing how we should go about writing this post.  It is a difficult one to write. The words are as difficult to say as they are to hear.  We have always tried to overshadow the negative aspects of GBM with all of the positive progress Glenn was making, but this time, that won't happen. Our skies are grey and we are begging, please don't take our sunshine away.

On Sunday, the 27th, Glenn began vomiting up blood.  So, once again, he was rushed to the ER.  After several tests, the doctor decided to do a CT scan.  The results were fuzzy, but it looked as if another tumor had formed. There was a lot of swelling and inflammation around the tumor area which was causing all of the problems Glenn had been experiencing the past week or so.  Glenn was sent home for the night, but was scheduled for another MRI on Monday night.  On Tuesday morning, Mom and Glenn met with the neurologist to go over the results.  Sadly, the MRI confirmed that another tumor had grown and his original tumor had grown larger than it was before the chemo and radiation was started.  After this devastating news, they scheduled an appointment for the next day with the oncologist to see what could be done.

When the oncologist walked into the room, he looked grim.  He told them that when he looked at the results of the MRI, it made him sick to his stomach.  He explained that the Temodar had not worked and they would not be giving him any more. He discussed a last-resort measure that can be taken, which sounds more unpleasant than GBM itself. He said the disease is aggressively progressing and will just snowball at this point. Because the tumor is in a different lobe of the brain, surgery is not an option.

The bottom line: we are losing.  We are losing the fight, we are losing options, and worst of all, we are losing Glenn.  The doctor gave him 6-8 weeks, possibly 2-3 months.  We are devastated. 

We have found an alternative treatment that should provide quality of life. Glenn has started taking it and between that and the steroids is doing pretty good. He has his mobility back which has helped immensely. We are still focusing on all of the positive things we have but the gravity of the situation is not lost on us and we continue to fight for hope.

Please continue to pray for our family.  We really need comfort and positive thoughts at a time where its hard to find either.  We really appreciate all of the kind words and acts of service that people have done for Mom and Glenn.  We will continue to keep you posted as we face the unthinkable over the next few months.

~Lindsay

Through Thick and Thin

 There have been many ups and downs over the last few months, but one thing has never changed: Mom is always with him. 

Those who know Linda will definitely agree that she is one amazing lady, and there has been no exception to her awesomeness during these last few months.  She has been pushed to the limit on more than one occasion, both physically and emotionally, but she has never once thought about giving up.  She has shown more strength than I ever imagined possible and continues to wake up each morning preparing herself for what challenges the day will bring.  This lady rocks!

 Today is Linda's birthday.  It is a pretty big milestone of a birthday, and it is one I know she has been looking forward to for a while.  She and Glenn had big plans to celebrate this birthday with a trip-of-a-lifetime to Greece, but instead they spent the day consulting with more doctors.  Not exactly what she had in mind, but Mom has never once complained about having to cancel her dream trip.  She is exactly where she wants to be- with her husband.  Nothing is more important to her than her family and she is the best mother, grandmother, and wife any of us could wish for. She is a selfless, strong, compassionate, caring and loving woman and we are all so lucky to have her in our lives.

We love you Mom!



~Lindsay

An Unexpected Gift

Glenn has been having a rough time over the last few days.  The chemo really seemed to wipe him out and he hasn't recovered like they expected. He's spent the past week meeting with each of his doctors to see what can be done and we should know more by Wednesday. Needless to say, he was starting to get into a bit of a funk.  Luckily, he knows some amazing people and he received an unexpected gift that really boosted his spirits.

On Monday, his good friends Sonnia and Steve came for a visit. They brought Glenn a BSU football and t-shirt that had been autographed by "Coach Pete", the Boise State football coach Chris Petersen. It brought tears to his eyes and he said, "I can't wait to wear this to the opening game."  He was truly touched by this amazing gift and it has definitely put more pep in his step!  



Today Glenn was able to put his shoes on without help after experiencing extreme left-side weakness the past two weeks.





Thanks Sonnia!




Ready for the first home game





Thanks Coach Pete!

We are so grateful to all of you who do so much for Glenn. He is touched every day by your kindness and continues to feel the love and comfort of your prayers. Thank you!

ROUND 2

Glenn has finished his second round of chemo. He has an intense dose for five days then has 23 days to recover. The dose will be increased with each round and they are anticipating five more rounds. The treatment is aggressive but the chemo is the only resource left to fight the tumor.

The medical oncologist warned us that he would experience “extreme fatigue”, usually occurring by the fifth day and for the few days that would follow. We thought we knew, but apparently had no idea, what “extreme fatigue” would be and that it could be so subjective! It hit with a vengeance on the 5^th day and by the next two days we didn't think it could be worse. But it was. We tried to compare it to the cold weather, since Boise has had plenty of that this week too. We thought it was cold at 20 degrees but then it dips to single digits, dabbles at zero, and then plunges into negative numbers. Yes, there is a difference, but ultimately, it’s just too cold! And as each day his energy plummeted, we realized he was experiencing more than just extreme fatigue, he was losing his mobility and other health concerns were exposed.

After consulting with the doctor, he felt it was best for Glenn to be evaluated at the ER. Needless to say, Glenn is sick of hospitals. Although he is experiencing “extreme fatigue”, it did not slow down the dialog about how tired he is of going to the hospital all the way there. I’m just glad the hospital is only 5 ½ miles away!

The doctor thought the problems might be from the seizure medication so they made changes and will re-evaluate tomorrow (1/22/13). Jared and Jamie came from Portland on Friday to spend the weekend with us. They always brighten our spirits and renew our hope. Their compassion and concern fill our hearts beyond words and it is always so hard for us to see them leave. We are also so grateful for our niece Tammy; she was able to roll with us and our sudden change of plans when we went to the ER instead of enjoying the fabulous lunch she had brought to our house. She kept us company at the ER while we waited for the tests and understood that we can laugh or we can cry but it’s so much easier to have a bellyache from laughing than a headache from crying.

We also appreciate all of you that have called, brought food, stopped by to say hi, prayed for us, laughed with us, and are there for us. It means more than you will ever know. We feel your love and prayers around us every day. And to our neighbor with the yellow snow blower, I will find out who you are one day, but until then, whoever you are, thank you so much!

In spite of all the “extreme fatigue” Glenn is still in amazingly good spirits. Although his physical strength is minimal, mentally he’s still Glenn and is thinking at maximal level all the time. Please keep the prayers, phone calls and letters coming….as Glenn says, they’re to live for! We love you all so much!

Linda

Two Happy Anniversaries

Today is a very special day for two reasons:
1. 14 years ago today, Glenn and Mom were married, making us one big, happy family.

2. 3 months ago today was when Glenn was diagnosed with a brain tumor.

Both of these days changed our family forever.
I am so grateful that Mom met Glenn and brought him into our lives.  He is such a good man and we can't imagine life without him. I am also glad that they have each other during this difficult time. Although the last three months haven't been easy, the pain has been eased by their love for each other, which in turn has strengthened their relationship. It's a little bit of a silver lining.

Glenn had his follow-up MRI last Thursday, and on Monday we finally got the results. Glenn still has two small tumors in his brain, but they are shrinking. The treatments have been working, which is awesome news!  He will continue doing chemo five days a week, once a month for a few more months, and then they will do another MRI to monitor the progress.  Overall, it was a better diagnosis than we could have hoped for and Glenn's spirits have definitely been lifted!

Merry Christmas and Happy New Year!

The sign above our fireplace says "Family is the best part of Christmas!" We have had such a wonderful Christmas because of our family. Brennan was the first to arrive when he came on the 10th to be with us while Glenn was in the hospital. He was so much help and finished the final touches to have the house ready for Glenn to come home and the arrival of the other kids. Lindsay and her Jared, and THE CUTEST GRANDBABIES IN THE WORLD arrived on the 19^th from Pennsylvania. Jared and Jamie braved the snow and made it on Saturday. We were so excited to be together that it felt like Santa had already delivered the greatest gift. (Or maybe that was because the Bronco’s won….Nah!)


JJ and Grampa take a nap



Glenn’s brother & sister-in-law, Gary and Peggy, hosted a family party on Saturday for all of our extended family. We appreciate all of those that came from near and far, for those that prepared the incredible food, and for everyone’s efforts in making it such a special time for Glenn. Our nephew Chad hosted all of the family on Sunday night for a traditional Christmas dinner that was amazing! We want to thank everyone for being so gracious and for making even more wonderful memories together, and especially to those that were so considerate of Glenn’s health and were not able to attend. Your thoughtfulness meant just as much.

Unfortunately, early Christmas Eve morning Glenn had a seizure. We spent most of the day in the ER and everyone had a sigh of relief when they let him come home. We had forgotten the joys of children at Christmas~~the big kids and the small ones! It was wonderful beyond words to have Christmas together. We have many memories and traditions that we will hold close in our hearts and cherish.

We also want to thank our friends Heather Sali/Heather Sali Photography and Brad Maynes/Mayne Frame Photography. They have chronicled our family over the past few years with their incredible skills. Since we would all be together we (Linda) wanted to do a family picture. Glenn was still recuperating from the last hospital stay; he wasn’t up to going anywhere for pictures. Heather and Brad came to our home and were so compassionate and considerate in doing everything necessary to get great pictures. On Monday, Glenn and I were waiting with Jared for test results in the ER when I received a text with our picture and a note that the pictures were being downloaded. Words can’t describe how much it meant to both Glenn and me at that moment. We cherish every day and the memories they have captured for us are priceless. They have given to us so generously and we love and appreciate both of them.

Thursday found us back in the ER with another seizure. We’re hoping the medication now has them under control but it is not being tolerated very well and seems to be causing other problems. The next two weeks are booked with numerous doctor appointments and we’re hoping for some improvement. Glenn will meet with his Neurologist this week and have the baseline MRI and an EEG. The MRI will let us know if the tumor has started to grow back or if the radiation and chemo worked. We’ll meet with the Neurosurgeon and the Medical Oncologist, and he will start his second round of chemo. We could use all of your positive thoughts and prayers as we await the results of these tests.

Christmas Eve~~A hot cocoa toast with the coolest people ever!

With all of the challenges, we take time every day to reflect and be thankful for the many wonderful blessings that we have. We are so grateful to our children for the many thoughtful acts of service they do for us and for their love and concern. We love each of them so much. We have felt the hole in our hearts get bigger as each one has left to go home this past week. They each do so much in so many ways. Glenn and I have always said if they weren't our children we would chose them to be our friends. We love you Lindsay and Jared, Jared and Jamie, Brennan, Jonas, and Addison! We are also thankful for our extended family. Your visits, calls, cards, emails, all mean the world to Glenn. We have amazing friends that buoy us up on our dark days and remind us what it feels like to laugh. We are truly blessed. We would like to wish each of you Happy New Year!

Love,

Glenn and Linda