Sunday, November 04, 2007

California Dreamin...aka quite possibly the longest blog post ever

At long last, the true and complete story of the miracles that tumbled into place for Sahara. Savor every word:

“I will never, ever give up.” That’s what I told Sahara after the first doctor told us that her tumor was inoperable, always fatal, and that even if we sought out other opinions we would be told the same thing. I didn’t believe it then and I certainly don’t believe it now.

When your child is sick, you can never stop searching for answers. Somebody, somewhere, just might have the ability to help you - finding that somebody is ultimately a parent’s responsibility, because even though I truly wish to believe that the vast majority of medical professionals treating cancer have enough experience and education, along with their patients’ best interests in mind, it has been our personal and extremely painful experience that there exists the occasional ego, greed, and, most disturbingly, errors of horrific magnitude. Then there is the unnerving fact that cancer is a business, an you’re only kidding yourself if you don’t believe it. (If you would care to read about some of the frightening things happening in our country, I invite you to bookmark You might get angry reading the articles…but if more Americans would GET mad, then maybe things would change.)

If you are reading this and have a child, or any family member, who is stricken with cancer or any other life-threatening disease, I implore you: get a second opinion. If you aren’t comfortable with what happens, then get a third. Then get a fourth if you want to -it’s your right! Check out the statistics on how often pathology reports are incorrect - you will be justly horrified. It happened to us - and it could happen to you.

It turns out that our fourth opinion was, in Sahara’s case, somewhat of a miracle.

Month after month, MRI after MRI, Sahara’s tumor, which was initially incorrectly diagnosed as a glioblastoma multiforme stage 4, did not appear to me to have the same characteristics and shape of those I had seen when doing research online. It wasn’t growing rapidly…it wasn’t spreading through her brain like the deadly “fog” of a gbm. It was round and fairly well-defined. Then, one day back in April, after going over her scans, one of the radiologists at the Burzynski Clinic in Houston asked one of our doctors there, “this is a low-grade tumor, right?” Dr. Samuel relayed this to me, which only made me suspect even more that it was NOT a gbm. (I will always be grateful to the people at the Burzynski Clinic…antineoplaston therapy bought Sahara nine months of precious time.) The conversation gave me the encouragement I needed to begin searching for a surgeon…THE surgeon. The one who could go in after this monster and take it out of our baby’s head. I knew he was out there. Somewhere. I began scouring the internet even more than I had already been doing. Shannon and I talked it over at great length, and we both agreed that if we could find this surgeon, we would take her to have the surgery as soon as possible.

And then I found him. The Chuck Norris of pediatric neurosurgeons. The man who routinely operates on children with “inoperable” brain tumors.

The man who, on September 12th, removed 70% of Sahara’s “inoperable” tumor.

His name is Dr. Michael Edwards, the Director of Pediatric Neurosurgery at Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California. I call him and his staff “the dream team” - because our dream of saving Sahara’s life is now much closer to reality than ever before. I can’t begin to express our gratitude to these incredibly compassionate and brilliant individuals, but we are so thankful for them…Dr. Lin, Dr. Klugh, Carol Ann, Jodette, Morisa, the residents and fellows (I wish I could remember everyone’s names, but I seem to be failing in that regard these days). We appreciate ALL of them so much!

The last week of August, I had sent an email to Dr. Edwards and to Morisa, the patient coordinator, asking if I could send Sahara’s records to them for review. I was feeling terrible, and so helpless, as we had learned a few days prior that the tumor had grown a bit. I was actually sitting in Capaha Park late on a Thursday afternoon, crying my eyes out and praying for a miracle.

And then, Morisa called me. She said to send Sahara’s records overnight and that Dr. Edwards would look over them as soon as he got back in town the following Tuesday. I was ecstatic! I ran home and got everything together, then flew to the FedEx office (so glad they’re open late). I told Shannon that I had a really good feeling about what was about to happen.

Dr. Edwards responded to me immediately after receiving the package containing Sahara’s MRI’s and medical records. He agreed with my suspicion that the tumor was not a gbm. He said he thought that it was a lower-grade tumor, and that he was confident that he could get most of it out. He scheduled her surgery that same day! Within a week’s time we went from an incredibly low point to a new peak of hope.

We raced to put together the trip to California, and five days after the conversation with Dr. Edwards, we arrived at Stanford. Sahara then had two days of tests and evaluations, and she was really in pitiful shape. Wednesday morning, September 12th, we admitted her for surgery, which lasted over ten hours. We basically went crazy all day long, but the reassuring visits from the nurses helped keep us together. We walked up and down hallways in every direction, roamed around in the gardens outside, checked out the various food offerings, anything to keep busy. Everything went so well, and she came through it all just fine. When we were finally able to see her in the PICU, it was such a relief…she had made it. Considering what she’d just been through, she looked really good!

The next morning she was given another MRI. The before and after images of the tumor are nothing short of startling. When Dr. Edwards showed them to us on the computer screen, it took our breath away. So much of the monster was now removed…it was an amazing moment and we will never forget it.

The tumor pathology reports took a few days to come back. As I mentioned before, the diagnosis is a ganglioglioma, a low grade tumor, although it does have some anaplastic features. It is still a very dangerous tumor because of its location and hodgepodge of cellular composition. But it’s we know it is not a gbm. And 70% of it is GONE. You can’t change the past, and what’s done is done, but we can’t help but lament over what might have been…what could have been…if we had been lucky enough to have the right surgeon the FIRST time. (Or at the very least, a surgeon who would have referred us to someone who could have performed the surgery, even if he could not. Ah, but that would have meant losing a patient to another institution; but it happened anyway.) At any rate, it continues to cause me a lot of sleepless nights, and Shannon and I really get upset when we talk about it. It is absolutely sickening.

She spent five nights in the PICU, not because she needed to be there, but because there were no rooms available for her on the main floor! LPCH is a small hospital, very specialized, and tough to get into at times. We slept where we could, when we could. Sahara did so well - she was off the ventilator the day after surgery, and she was eating regular food two days post-op. (Shhhhh, that was supposed to be a secret. Sorry, Dr. Edwards. LOL.)

After we were able to get a regular room, we stayed there for a week. It was amazing to see how much better she was looking, even though she had just had major brain surgery. She had more feeling and movement in her right side, her eyes were clearer, and her incision was healing very quickly.

The next week, we had the good fortune to have Sahara admitted into the Comprehensive Rehab Unit at Stanford Hospital, which is adjacent to LPCH. This is an acute rehab facility that serves patients with all kinds of injuries and disabilities. We met people who had been in accidents, who had strokes, who had knee and hip surgeries, and one very sweet young mom with multiple sclerosis. Sahara was the baby on the floor! She was blessed to have an AMAZING group of physical, occupational and speech therapists who worked with her for five weeks. Without them, I don’t know what I would have done! I am so grateful to them for their help (and patience with me….oy) during a time that had a lot of stress thrown in to keep it all interesting. They kept her moving, and they got her on her feet. Sahara actually cried when it was time to be discharged, because she said she was going to miss everyone so much. Thank you so much C-1 staff - we love you! (Thanks to Lisa, Chris, Barbara and Sandy for the wonderful gifts!!!)

Sahara had her share of setbacks and annoyances while we were there, but she always worked as hard as she could. If she felt bad, we let her rest. Coming off the decadron has been incredibly hard on her at times. It made her so tired and weak that she couldn’t even hold her head up some days. But most of the time she was ready to work. She even had school…it was only half an hour a day, but she really enjoyed it. She had a very nice teacher named Kevin, and they worked on math and literature together. I was glad to see her using her mind - one can only watch tv for so long.

As our time to leave drew near, Sahara had to have another MRI. Talk about nervous…I absolutely hate MRI days anyway…but this was a big one. After a very long wait to get worked into the radiology schedule, it was finally done. The wait for results always drives me crazy - but thank God, the results were good. The tumor showed no new growth since she had surgery. There are still some funky cystic areas, but we can deal with them later if they don’t wither and go away on their own. Dr. Edwards was pleased and gave us the green light to be discharged.

It was kind of scary to know that we would soon be going home, away from the skilled people who had taken care of Sahara for so long. But we are so blessed to have our great doctors and nurses here in Cape - I know that if she needs help, it’s only a phone call away. That is such a great relief!