Good to be Home... potential local clinical trial

Hi... our family vacation was wonderful. We took some fun family photos while out there... I've included a couple in this post. Returning home was even better because Greg came in town. We had a wonderful weekend together. He left on Sunday, and now I'm fighting a sinus infection and what I think is a kidney infection. Mom will call the doc tomorrow.

My Mom also learned of a clinical trial occurring here in town to test the safety of TVAX Immunotherapy as a treament for recurrent Grade 3/4 Gliomas. The study is currently recruiting participants, Mom sent an email over the weekend and has been asked to call them directly tomorrow. Here's what we know about the TVAX treatment -

it uses a patient's own cancer cells to initiate an immune response against their cancer. That response is then leveraged by harvesting the newly generated cancer-specified blood cells, turning them into killer cells in the laboratory, and then delivering them back to the patient.

Stay tuned.. we'll post an update after we learn more. I also have my next appointment with Dr. Taylor on Thursday. I don't think we're doing an MRI... we're just checking in. I'm hoping she'll grant me another month of flying since I'm not having headaches. Maybe, if she does, I can get out to San Deigo to see Greg. He is coming back to KC July 4th weekend so I have that to look forward to. Other plans include trying to get to Ohio in early August for a wedding, and then he's trying to accumulate leave so he can come here for 30 days in October prior to leaving for Japan.

The biggest change I'm noticing is with my speech. I'm a lot quieter because it's hard to find the words... Mom is typing all of this because she, well she's been my Mom for 24 years and she knows me. I talk, she types, she reads back, and I say that's it or not.

Please keep the prayers coming. Our prayers for good days continue to be answered. Lets pray that I will qualify for this clinical trial!

Family Vacation

Since the doctor said I could fly, we planned a quick trip to Florida. The original plan was to go the Keys but my generous Great Aunt & Uncle gave us their time share in Daytona Beach. We're here and it's wonderful. We've enjoyed the beach, the pool, and most importantly spending time together as a family. I've included a couple of photos...

Quick update from Me; Some education from my Mom

My (Lindsey) update:

Hi.. it's been awhile since I updated. I've been busy. Last weekend we ate our way through Branson. The pictures above are from our last stop at Lamberts. (well, next to last stop before Dairy Queen). I can't believe my Mom has never been to Lamberts! Mom and Hannah are showing off their food babies after eatting one to many rolls! The photo of the cross-eyed girl is my cousin Kelsie. She's crazy fun. We were having a rockfest in Big Red(aka the Surburban). The seatbelt she is holding was actually her microphone. Even Grandma was singing along. Branson was fun. We saw one show - "Six", shopped, went to Silver Dollar City, but mostly hung out and had fun.

I continue to feel pretty good. I'm sleeping, no headaches, and I've been able to go out with my friends. Thank you friends for planning things to do with me. It's the pits not being able to drive.

I'm looking foward to this weekend. We're heading to Daytona, FL on Sunday and then Greg comes in on Friday night. I miss him terribly. We're suppose to go to a wedding in Lincoln next weekend but I'm giving some serious thought to Greg and I staying in MO while everyone else goes North. I'll see what he would prefer to do. I hope my friends in Lincoln understand.

Update from Mom:

The Morris house is humming again with the sounds of laugher, activity, and the regular routines of life. Ahh.. how nice it is to have Todd and Hannah home for the summer, and to have the Lindsey that we all love and cherish back. Lindsey's doing pretty good. While moments of extreme sadness occur, those times are less frequent. We're in search of a good support group for her to attend. She's also struggling a bit because she'd like to do something to earn money, to contribute and help out. Everyone else is working this summer and it's hard for her because she is use to being so busy. We're working on what her "jobs" or "contributions" can consist of.

I find myself laying in bed at night, and in the morning thinking about what else we can be doing to fight the tumor. It's very difficult , you feel so helpless. If you're a parent, I'm sure you can relate. I continue to wonder why it's been so difficult to find a cure for Glioblastomas and why is it that the tumors typically return. This week I found an article which is the first one I've seen that helps to answer my questions. The article is dated April 2010 in "Science Daily". - Brain Cancer: Study Focuses on Forgotten Cells. I've included a few notes from the article below:

* Glioblastoma is a guileful enemy.

* While most of the brain tumor can often be removed surgically, in virtually every case the tumor reappears. One reason for this is that sporadic, infiltrative tumor cells will remain in the brain even after the most careful surgery and treatment.

* These "forgotten" cells have been scrutinized more closely for the first time!

* Many of the fundamental properties of the "forgotten" cells were substantially different from the cells in the midst of the tumor mass. Thus, one potential explanation as to why radiation or chemotheraphy cannot entirely prevent this deadly disease to reoccur.

* While examining the residual cells, the researcher made an astonishing discovery. The cancer cells in the vicinity of the tumor have different properties compared to those from the center of the tumor. For instance, they are more mobile, they form other receptors, they react differently to radtiotion therapy or chemotherapeutic substances.

This group of researchers are on to something. For new approaches to therapy they first new to better understand the biology of the cells even better.

So.. to help with the funding of research to find a cure for brain cancer, the Morris Family is forming a team to participate in the August 29th "Head for the Cure" 5k at Corporate Woods. We'd love to have you join us! You can walk or run, or simply show up to cheer us on. We'll share more information as we get this team together. We're in the process of thinking of a team name, t-shirt designs, sponsors for the t-shirts, etc. If you have a suggestion for a team name please send it to me - skm22@embarqmail.com. We're creating a list of names for Lindsey to pick from.

Also, if you're interested in sending Lindsey a card or giving her a call, she would love to hear from you. Send me a message at my email above and I'll be glad to give you Lindsey's information.

Thank you for your continued positive thoughts and prayers. Your prayers for "good days" have been answered! We're at a spot now where I can begin to transition back to work!

I'm a College Graduate!

High school graduation - 2004

College graduation - 2010

It took me 6 years, but I did it! While it's not the Education degree I was working towards (which would of occurred in December 2010), it's a degree which represents more hard work then most students can imagine. My professors and advisors tell me that most students would of given up. And, in case you're wondering if UCM made a special exception because of my brain tumor, they did not. I had 120 + hours and I met all the requirements for a degree in general studies.

I've attached a few pics. It was a great day, but exhausting. I was in bed by 8:30.

Update from the Doc Appt

If you know me, you know I love the color pink!

I don't love the fact that today I saw with my own eyes that the tumor is still there and it's slightly larger than it was before. Yes i's growing. And it's not pretty. It's stupid actually. The routine of taking my temperature, taking my blood pressure, my heart rate etc and hearing the nurse say that all is good is annoying. All is not good! I have a freaking tumor growing in my head.

I talked with Dr. Taylor about starting chemo again. But then when she emphasized the rigid nightly routine of taking meds and the weekly trips to the office for blood testing, and she couldn't promise me that the tumor would stop growing, I said "Nope. Not doing chemo again." I'm feeling good right now and I want to have as many good days as possible, instead of feeling crummy and being poked on etc.

The great news of today - I CAN FLY! I did a little happy dance in the office when Dr. Taylor said she thought it would be okay. Mom's a little nervous... But I have to do it soon. So... we're busy trying to pull together a family vacation to San Diego. We'll have some fun and I'll get to see my husband. He's planning to fly back here Memorial Day weekend so if everything works out, I'll stay in San Diego with him for a week after the rest of my family returns home. Please pray that this trip will work out! It could very well be the last family vacation together. :o(

God - thank you for another great day of feeling good. Thank you for smart, kind, compassionate doctors.

Oh, in case you didn't know - Tomorrow is graduation day. I'm so excited!

Just got home from having Mexican food with my parents and Todd. We're picking Hannah up in a little bit. Todd and Hannah will be home for the summer!

A little nervous this morning...

I have an MRI today and a follow-up appointment with Dr. Taylor. The MRI will help the Dr. and I evaluate the effectiveness of starting chemo again. For me it's a decision about do I fight this on my own and trust that God's will for me is greater than any medicine out there or do I go back on chemo to help slow down or stabilize the growth?

While I'm having good days, and enjoying doing things with my Mom and others, I also have terrible mornings and nights when I think about what is going on and what it really means for me. I know many prayers are occurring, all around the world. I know some of those have been answered. While I know that I will go to heaven, I wasn't planning on going anytime soon.

I hate watching what this is doing to my dad. Dad and I are like two fingers crossed together. We are very close. Please pray for my Dad. Give him strength to get through this crisis.

Thank you to Mary Nelson for coordinating a graduation celebration at my previous middle school. It was great seeing my teachers and my friends. The ice cream, the cards, the chance to visit with everyone was great! Mary - I've opened your "Hallelujah" card many times! I love the music cards! Oh, and in case you're reading this Blog for the first time, I'm graduating from UCM tomorrow! One major goal and milestone done!