Sunday, March 30, 2014

It's not happy people who are thankful; it's thankful people who are happy.

Today was our spaghetti dinner and I must say we are completely overwhelmed (in a good way) by all of the support we have received.  To see our community come together to help Jon and I is extremely heartwarming.  Without your love, support and prayers we would not be where we are today.  Our attitudes continue to stay positive from all of your kind words and prayers.  I want to give a special thank you to Elegant Tents and Events. Everything was delicious and all of your hard work is greatly appreciated.

I would like to thank our family & friends for all of your time, effort, support, hard work and commitment to making this benefit a huge success. We love you all so much.  Having you here supporting and encouraging me makes me feel stronger and more determined to beat this.  I hope each of you know how much you mean to me.  I am truly blessed to have you as my support team. The love of a family is life's greatest blessings.

This week I have appointments with my neurosurgeon and oncologist again.  We have made a decision to send my scans and records to a dr at NYU for a second opinion.  We hope they receive the records this coming week.  My oncologist had called me to report they strongly believe the tumors are inflamed from radiation and I may not need chemo.  I just want for sure answers and plans for the next step.  Tomorrow my case will be presented to the tumor board and to the pediatric board.  The neuropathologist at UPMC and St. Jude's  diagnosed me with Disseminated oligodendroglial-like leptomeningeal tumor. No idea how to say that!!!

Thank you doesn't even begin to express my emotions for all of the support we have been receiving.  Jon and I are speechless.  You have all touched our hearts.  

Take pride in how far you have come, and have faith in how far you can go.

Tuesday, March 25, 2014

A good laugh and a long sleep are the two best cures for anything.

As most of you know today was my rescan date. I was in the MRI for about an hour and half... I totally redesigned our backyard in my head. Jon has a lot of work ahead of him this spring!

While meeting with my dr. He didn't have many answers for me. My scans show that the tumors are enhanced. Basically what they feel is that the radiation is still in the tumors and may be making them inflamed.  So they are unable to tell if the radiation shrunk them or if they grew. He said we have to wait until the dust settles to see what is going on. A team of oncologist will meet this week to discuss what the next options will be. My scans and pathology report will be sent to a dr. at NYu for further examination. I will go back next week for further information.  They are still discussing chemo as an option.

It is very frustrating having to wait this long and still not have many answers.  They keep telling me how rare this is. I feel like it has been 3 months...someone needs to figure something out. I'm just ready to be back to normal!

Please keep the positive thoughts and prayers coming. Thank you again!!

"We have two options physically and emotionally: give up or fight like hell." Lance Armstrong

Sunday, March 23, 2014

Big week coming up!

It has been a while since I updated last
Not too much has changed ... we are moving forward with physical therapy. I feel I am getting stronger and seeing improvements. I go 3 times a week and try to do some exercises at home on off days.

This week I go for my rescan on my brain and back. When we get the results and discuss with my family I will be sure to update everyone. Next week I meet with my neurosurgeon to discuss what the next options are.

Hopefully all turns out for the best. Thank you for all of your prayers and support!!

Tuesday, March 11, 2014

Pain is just weakness leaving the body!

Wow! First day back to PT and I am feeling it! It feels good to be up and moving again...makes me realize how out of shape and weak I am!

Today we did leg exercises and stretches and I even got to peddle a bit on the bike. Makes me want to get back out on the trail...especially on a beautiful day like today! At PT we also focused on my shoulders. I get sharp pains through them when we do exercises so hopefully this will start to work itself out and go away. As far as the drop feet, my left is still the worst. I know I have a long road ahead to get this corrected but I'm confident we will get there!

Hopefully tomorrow I am able to move around because I feel I am going to be pretty sore!

Thank you all for your continued thoughts and prayers . These past 2 days I was able to sit outside and enjoy the weather and catch up with neighbors. Jon comes home from gym and tells me all about my shirts he sees out. Little things bring such a smile lately!

      Count your rainbows, not your  thunderstorms!

Friday, March 7, 2014

Hey little fighter, soon things will be brighter

I know I have been a horrible blogger lately!

Since I finished radiation last week I have not been feeling all that well. I caught a cold over the weekend and that had be down for a few days. Once I recovered from my cold I began waking up severely nauseated to the point of not wanting to eat or move for fear of throwing up. I met with my radiation Dr yesterday and he said this is all normal and within the next month I should start to feel more like myself. March is definitely a long waiting month! I just keep praying the rescan shows everything is gone!

I start PT on Monday. I'm looking forward to that so I can finally get into a routine and get out of the house. I love hanging out with Remi...but the conversations can only go so far.

Thank you all for the prayers and support. You will never know how much it means to us.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." -Elizabeth Kubler Ross