"I have NF just like you!"

This is my purpose that exceeds my pain. This is why I push through pain to make these capes. This is why my tumors and the issues they cause is "well" with my soul. When I told this little chicka that I have NF just like her. Dangit, tears are filling my eyes as I re-live it. The look that she gave me, I swear to you...I saw hope. I saw peace. I saw joy. I saw comfort. I knew that I had to give her one of our capes, so when I got a donation, I used part of it to pay for her cape. When I showed the cape to her she jumped and squealed and shook her fists with excitement and then ran at me with the sweetest hug. This is the life man. To fill these kids with joy and be able to relate with them. And then to fill their parents with hope as they learn about my tumor-ey journey yet see how I live is both humbling and inspiring. I absolutely love my LA neurofibromatosis family. Tomorrow I am meeting with the guy that is the head of marketing in the New York headquarters office for the children's tumor foundation to talk about working together in a more constant and larger scale way. I am unbelievably excited for the opportunities that this could bring. Pray for that if you'd like but could ya please share in the joy that @tumorhater raised $1,232?!?! And that I felt well enough to do the event yesterday? Also, how cute is her face!?!?!?! The way she is looking at me is just killing me. Also also, don't forget to follow tumor hater and to spread word so we can raise more funds for our heroes! Order any of our items at tumorhater.org thanks friends!!

Oh Nelson Mandela...ya did it again.

"There is no passion to be found in settling for a life that is less than the one you are capable of living." - Nelson Mandela
As I daily have to silence these awful lies that I hear the enemy screaming at me just in order to get out of bed...this hits home big time. I know that if I choose to push hard for it, if I dare greatly and keep saying 'yes' DESPITE my circumstances that The Lord would blow me away with what my fullest potential truly is. Guys, we are so capable it's nuts. We can do such hard things. Don't believe the lies you hear in your head! Don't let fear of failure stop you from trying. Blow your own dang mind my friends. At the end of your life...don't let yourself have the regret of not taking risks or following your heart. I urge you to take your life and Dare Greatly, we only have ONE LIFE. Let's USE IT!!! p.s. My 'Dare Greatly' top along with another grey unisex one can be found on tumorhater.org 😉 (PC: @addi_black) #tumorhater #tumorsfordays #neurofibromatosis

tumors, paresis and infections 'Oh my'!

The past few weeks have brought a lot of insight to my breathing difficulties that I've been having for a few years. At Stanford they discovered that my diaphragm is partially paralyzed. The diaphragm is responsible for 80% of lung function, so clearly my diaphragmatic paresis is gonna make breathing harder. Also, I've had bacterial staph/psuedomonas infection somewhere in my airway for the past few months. I've been on antibiotics but the bacterias are still there. So I was referred to a pulmonologist to decide what the next step was. She ordered a stat ct scan, antibiotics, a vibrating vest and another device that will both help break the junk out of my lungs, and then she asked if I ever was tested for cystic fibrosis. 😳 And no, I haven't. So fast forward till now, I have been informed that both bacterias have colonized in my lungs, and that the tumors in my lung cavity are stable. One shows that it is in the pleural space of my right lung (which is like the little pockets in the lung lining) but still I think that needs to be made sure of. Also, if this round of antibiotics doesn't work I will have to get a port placed and get IV antibiotics for a couple weeks. If THAT doesn't work she thinks I for sure need to be tested for cystic fibrosis and that I will probably then have to be admitted and get more intense treatment. These bacterias can get into your blood stream and then become something faaaar more serious. I had no idea till now that there is apparently atypical adult onset cystic fibrosis. She also is gonna have me do another pulmonary function test as well as a sleep study to know even more. Please pray these antibiotics work and that I won't grow more sick. No pneumonia, no cold, no nothing. I have been feeling more tired than normal lately and have repeated bouts of feeling something coming on but it never fully develops. #tumorhater #tumorsfordays #neurofibromatosis