Saturday, April 12, 2014

Keeping calm and fighting on!

This past Sunday and Monday I was waking up extremely nauseated. I knew I had to get rid of it since I was flying up to NY on Tuesday. Well Tuesday morning rolls around and I begin vomiting. I made it to the airport and up the stairs of the plane. And to no relief the plane ride was a bumpy one. Once we got off the flight we went to the hotel and I started to throw up again. My poor brother in law had to deal with all of this and take care of me. I was really hoping to feel better Wednesday so we could site see a little but I started vomiting again. I had to pull it together for the apt at 130.

At the apt the Dr was extremely nice and personable . We discussed the scans and he said that my brain ventricles are in a sense shrinking and if I have headaches it is a worry because there could be a build up of pressure. He said he has seen about 5 cases of this in children. He also agreed that this is very very rare in adults and he was going to send my files to John Hopkins. He will keep in contact with my team of drs here at UPMC.

So we are going to get on the airplane and my legs have become so weak that the pilots and my brother in law had to carry me and basically drag me to my seat. Getting off the plane was a site to see. I had 2 people carrying my legs down the steps and my b-i-l carrying my upper body. But we made it!

Thursday I was still very sick and barely got out of bed. I had a headache but was able to keep toast down. That was all I had eaten since Monday night.

Friday I attempted to shower and made it there with my walker. When I went to get out I couldn't move. I left my phone in the bed. I literally crawled from the shower to bed and called Jon. He got me into bed and I started to dry heave and got another headache.  At this point we called my neurosurgeons nurse and left multiple messages and emailed the neurosurgeon himself. Of course no answer. We decided to come to the er and I received a ct scan, of my brain to make sure the ventricles were not getting clogged and they weren't!

So today I woke up with a horrid migraine. Jon was rubbing my shoulders trying to rub out my muscles. The drs had fluids through my iv and pumping me with different pills. I felt that was making my stomach feel worse. I kept napping it off and around 1230 I started to feel better and better. I'm ready to come home now!

They sent out a test for the flu, they said it should be back tomorrow and then told me I have a viral infection. Everyone has to wear masks around me.

We moved my first treatment until Monday. They said they want me to be as healthy as possible before I start this. We will see about that. Maybe that's why they keeping me here to keep fluids in me.

Hope everyone is enjoying the beautiful weather! Thank you for the love & support!

Monday, April 7, 2014

Just wanted to give an update on what is happening...

Tomorrow I will be flying to meet with a Dr from NYU.  He specializes in brain and spinal cord tumors.  I am hoping he will be able to provide a little more insight to the type of tumor I have and if he has any different thoughts than UPMC.  My appointment isn't until Wednesday.  I fly home Wednesday evening.

Thursday I am to start a new treatment called Avastin.  The UPMC drs believe that my tumors are inflamed by the radiation and because of this they are not able to tell if the radiation worked.  The Avastin is every 21 days for 14-16 weeks and its job is to take away the inflammation from the tumors.  If this works, the tumors should shrink.  I have another rescan date set for May 20.

As far as PT, everything is progressing very well.  I am walking with a cane with some assistance.  Today we walked about 800 feet!  I also have been working on steps, I can go up and down with little to no assistance.  My feet are slowly seeing some progress.  We have been working on pulling my feet up with the stimulation machine.  I get filled with hope that I will conquer the drop foot...my goal is by the end of the year..even if it is just on my right side!

Thank you for the love, support & prayers.  We greatly appreciate everything everyone has been doing for us.


"Sometimes all you can do is not think, not wonder, not imagine, not obsess.  Just breathe and have faith because miracles do happen."

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