Cancer is evil

Stefanie Jacobowitz was a beautiful person.  She died of ovarian cancer three days ago and I haven't been able to stop thinking about her and her family.  She was 44 years old, she has three small children and she always struck me as such a loving mom and wife.  I looked up to her and admired her hysterical sense of humor and her easygoing perspective on life.  I am just so sorry and so sad. 

I had so much to share about Ty's progress the other night but when I logged onto my computer and learned about Stefanie, I simply couldn't write anything.  I was completely caught off guard and I have been so depressed over the news.  I just needed a couple of days before I could update everyone on the little things happening in the Campbell family when another wonderful family is hurting so much. 

I worked with Stefanie for several years when I was younger, and we reconnected on Facebook about five or six years ago.   She followed Ty's journey and sent me words of encouragement often, even after she herself was diagnosed less than a year ago.  She still thought of Ty and contacted me before his MRIs to say she was praying for him.  All I can say is that she was a remarkable person.  I used to laugh out loud at the clever remarks she was always posting on Facebook because she was just so funny and fun to know.  She made me smile, she was sweet, she was kind and she should still be here; playing with her children and holding her husband's hand.  When is cancer going to be stopped? 

News like this naturally brings out my worst fears about cancer and what it has in store for Ty.  I had to do laundry last night and I hesitated before scrubbing his pillow case to wash out a huge blood stain.  The other night he had a bloody nose from hell - I swear it looked like a horror movie.  It happens sometimes.  His platelets might be low and the high doses of Accutane dries out his skin and his membranes so badly that they bleed something awful.  Anyway, I hesitated because I thought I should keep the pillowcase with the fresh stain so I could hold onto a real, tangible piece of Ty.  The same way I held onto some of his hair when we had to shave it.  That was his blood, a biological part of him, and if anything should happen to him at least I could hug that pillowcase and run my fingers over the stain.  I realize how strange this sounds, but it's the truth.  In the end I scrubbed it and threw it in the machine because I believe in Ty and his continued improvement... and because you all do, too. 

Last week, it was Ty's turn to bring home the class pet again.  Spot.  Thanks to our wonderful friends Charlie and Rachel, we were able to bring Ty and Gavin back up to their house in Vermont for some quiet time in the mountains, and of course Spot came with us.  They all had a great time and we even went snow tubing. 

Ty has been walking very well. He is standing without any support for a few seconds at a time, and he no longer needs support to hold him up as he walks. He just needs to hold our hands for balance, but his legs are finally strong enough to bear his weight and his ability to pull his left leg forward has greatly improved. His left forearm/hand is still very weak and spastic, but it is slowly improving as well. I am excited to see his physical therapist tomorrow because I wonder what else I can be doing to help him get closer to walking on his own.  The other night Ty whispered to me, "Mama!  Some day I'm gonna walk by myself!"  It was just so cute how he whispered it in my ear. 

Ty has been feeling great and having fun.  The Etoposide hasn't knocked him down much at all, he is still staying active during the day.  Today we had a lot of fun with his cousins James and Ryan, and later Ty made valentine's for all of his classmates.  He put a lot of time into each one.  On the back of each, he drew what he said was "candy" and then he wrote his name the best he could.  Here is an example of the front and back.  He made hearts for the girls and blue squares for the boys (of course, I wrote his name on the bottom, too).  Cute!

His appetite hasn't improved much, but he has transitioned from the square pretzels to some noodles with butter and sprinkle cheese, which makes me very happy.  He also drank seven mini yogurt smoothies today and he ate a few bites of cheese.  Every little bit is a big deal. Some very kind people have written me emails with food suggestions, and I just wanted everyone to know that Ty also gets supplemental shakes through his G-tube that are filled with vitamins, proteins, calcium, etc.  He has a nutritionist at Sloan Kettering who has special ordered these shakes in an effort to meet his daily needs, so hopefully he is getting some balance.  I remember how devastated I was when I was told he would need a feeding tube back in August of 2010 and when I reflect on that now I don't know how we would have ever gotten by without it.  It gives us such an advantage when it comes to his diet and administering his medication.  Whew!

I can't believe it's 1AM and I don't feel tired at all.  I am going to attempt to get some sleep, but I have a feeling I will be tossing and turning tonight.  Goodnight everyone!