Our miracle RAINBOW BABY BOY arrived 8/2018

1st IVF = BFN
2nd IVF = Baby A, born May 2015
3rd IVF = Miscarriage at 14 weeks
4th IVF = BFN
After we paid for 5th IVF, positive pregnancy without IVF!

Because the important moments in life just don’t fit in a status update! I started this blog when I was training for my first ½ Ironman, (70.3 miles) to record what I hoped would be growth and progress but ended up being a huge learning experience. Although fitness is one of the key ingredients to a happy life, it certainly isn't the only ingredient. My blog has evolved to document growth, progress and setbacks in other areas too. From my surprise proposal in Rome and wedding in the fall of 2013, to Mom's devastating stage IV cancer diagnosis and death 2 weeks after I found out I was pregnant. Who knows what shape it will take, but thanks for being along for the ride.

Friday, April 4, 2014

Good news! Bring on the Cyber Knife! (And then to balance it out, some bad news...)

Stanford Hospital & Clinics
I am so excited right now! I just found out that Stanford University Medical accepts my Mom's insurance. They have a treatment option - the CyberKnife, that may be our next step.

Mom has responded so well to her gamma knife radiation for the treatment of the cancer in her brain, that it left me wondering if she could have the same treatment for the tumors in her body. Did such technology exist? Every area and new lesion that has appeared in her brain has shrunk when zapped with the gamma knife, yet the tumors in her lung, adrenal glands and surrounding her pancreas went right back to the size they were prior to treatment when she took a break. And, she is nearing her "lifetime limit" of that chemo.

I asked her neurologist if she could have the gamma knife in her body and he explained that gamma knife is specific to the brain, but there is the CyberKnife. Not surgery like the name implies, both gamma and cyber are essentially the same: they pinpoint radiation to the target area to stop the growth of the tumor. The difference? Your brain is completely stable and doesn't move, so they can deliver a higher amount., requiring only one treatment. They screw in a mid-evil looking device to her skull and lock her into the machine, which weighs approx. 44,000 pounds. This ensures no movement and targeted delivery to the lesions. 

Well, your body is different. There is more movement, from your heart pumping to your lungs expanding and collapsing. They cannot ensure complete stillness, so they cyber knife delivers less radiation per session, requiring a course of treatments. He doesn't use the cyber knife, and there isn't even one at UCI Medical or even Hoag! But, there are CyberKnife centers, listed HERE. With excitement and new hope, I started searching some of these, such as the Pasadena CyberKnife Center.

But, we don't just want any old center for Mom...we want the very best! This is, afterall, her life that we are talking about. Nathan has a cousin who is a doctor, and here's what she had to say: 
The only reason why I would recommend going to Stanford University instead of the Pasadena cyberknife is at Stanford University they would bring your mom's case to a tumor board- meaning that doctors from all different specialties (oncology, radiation oncology, radiology, pathology, and thoracic surgery) would review her case, her labs, her pathology, and determine collectively what is the best treatment for her...whether the cyber knife or a combination of cyber knife and chemotherapy. Also it appears that at Stanford University, they are experts at treating patients with the cyber knife. They have already treated 2,200 patients. Meaning they know what is the best dose and what side effects to anticipate.
I thought this sounded amazing, but realized a place like Stanford might not accept her insurance. Yesterday, I emailed them and also the center in Pasadena. This morning, I had two responses: one from Pasadena stating they were not contracted with TriCare, and one from Stanford saying they did! The one possible snafu is that this technology is so new, that sometimes, insurance companies do not want to pay for it. But not to worry! If her insurance company denies us, I will fight and appeal. This is common, and there are tips found here.

It's impossible to convey just how excited and hopeful I am having learned all this! Since I'm off all summer, I can totally make the 6 hour drive up there with her for treatment, stay in affordable local hotel that offers a discount to patients, and drive her home the next day. We would likely have to do this 10 times, but so what! I'd drive around the world for her, and that's not even possible!

Prior to finding this out, I was so worried about ending her chemo treatment with the one that was working, and having to go on another one that might not work or at best, just slow the growth. Now, there is a chance - a big one - that she could come off chemo and have those little bastard tumors zapped into oblivion. Or, at least shrink in size and not grow. We could be looking at years here! 

I am elated! And this news comes on the minimum day Friday before Spring Break! Tomorrow morning, Nathan, Trevi, Mom and I pile in car in the morning and make the 14 hour drive to stay at his parent's house 30min outside of Eugene.

And.........just when this blog posting was going to end on the happiest of notes, and as a perfect illustration of the roller coaster ride we are all on, Mom just left her neuro-opthamologist appt. and called to say that results of her spinal MRI are in and they did find a lesion on the 6th nerve that comes out of the spine. This is the cause of her double vision, and likely means that she has cancer now in her spinal fluid. 

What does this mean? Well, the chemo only gets the body, and the gamma knife only gets the brain. So, now...she is going to need to go in for surgery to have a portacath (port) put into her head so that a different type of chemotherapy can be administered directly to her spine. And with this, a lot of uncertainty and a whole host of questions: what will the side effects be? Will it get rid of it completely? This breaks my heart, because she has been through so much and we just can't seem to keep ahead of this.

But you know what? There will be no doctor's appointments for our entire vacation in Oregon, and we will get a ton of time together to cook, crochet and talk. And that's something to be thankful for. We will deal with the rest of it when we get back.

1 comment:

  1. So sorry about Mama's new news about her spine, but I am so happy about your new hope and trip to Oregon! Try to just have a wonderful time in Oregon and not think about any of the bad stuff. Just enjoy and love! Have a safe trip! Love to you all, Drea