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.

Monday, March 17, 2014

Mom's Latest

When we are children, our parents are our biggest advocates. They will go to the ends of the earth for anything that is in our best interest. As our parents age, the roles are reversed and we need to harness some of that chutzpah and advocate for them.

On Thursday, my Mom started seeing double out of her left eye. But this didn't come up in conversation until Friday night, when I stopped by with some pie because she didn't think it was a big deal

Twelve hours in the emergency room later, and they were not able to determine a cause. We had joked on the drive there that they were just going to send her home with an eye patch. Instead, she was sent home with instructions to buy an eye patch and follow up with other doctors next week.

We had a good weekend in spite of not knowing why. 

Saturday, my friend Margie invited Mom and I to dinner Shenandoah at the Arbor. We sat outside. As the sun went down and the twinkle lights came on, Mom declared that it was the nicest place she's ever been. She thoroughly enjoyed the freshly baked apple fritters they brought around, her white bean soup, lemon chicken and a glass of wine.

On Sunday, she came over and we made two loaves of Irish soda bread. She's made it for years, but I've never made it with her. It's surprisingly simple: the only ingredients are flour, baking soda, salt, baking powder and buttermilk. It tastes delicious, especially slightly toasted with gobs of real butter. She also taught me to sew on a button and mend a pocket. How did I make it to this age without knowing how to do either? Then we took Trevi and Isis in to get their nails trimmed. Even simple errands are more meaningful with Mom there. 

Monday morning rolled around and it was time to start making the calls. UCI Medical ordered a CT scan back on March 3rd, but when I checked with them last week, they said they had not heard back from the insurance as to whether it was approved or denied. Turns out, after calling my Mom's insurance and pretending to be her (they only way they will give me any info.), that it was approved back on March 5th. Agh! Can you let UCI know? Of course not...UCI would have to call because they already sent it in. So when I finally get through to radiology and try to schedule her CT scan, they told me they can't schedule because they don't know if it was approved by insurance. Even though I'm telling them it has.

That's when tiger daughter comes out. I don't care if we have to pay out of pocket for the CT scan, I need it scheduled today. This should have been done weeks ago.

It worked, and Mom went in today for her CT scan, the results of which will be read tomorrow. Since she stopped chemotherapy in January, she has not had a scan of her body. This scan is going to tell us what the cancer has been doing (or, hopefully not doing) during this time off. After the scan, she met with her Neurologist, Dr. Carrillo. He said that maybe the cancer is now in her spinal fluid and he needs to do another spinal tap on her next Monday.

I thought we were in the clear with the brain and the spinal fluid because the test came back okay the first time he did it. And just last Monday, we were celebrating the fact that her brain MRI was all clear: no new areas of growth and the ones treated were smaller. Sometimes, like today, it feels like we take one step forward and two steps back. Right now, I'm left with more questions than answers. Will it get worse? What if tomorrow the other eye is affected? With treatment (chemo administered to her spinal fluid) will it go back to normal?  And it is so difficult to see her now having trouble getting around because she has to wear a patch over her eye. We went to Pat and Brittany's and had a great time but now, getting ready for bed, the full impact of her sight being affected is hitting me. Right now, she can't even crochet...something she was doing every day; making a baby blanket for me, and one for Brittany. 

It is heart-breaking, and I'm powerless to stop it. The only power I have is advocating for her and trying to get her the very best treatment, which would not have been possible had people not chipped in to move her out here. The quality of care she is receiving at UCI Medical is wolds apart from county medical in Moreno Valley. I have to remind myself of that, and the fact that the worry and fear don't change a damn thing.







2 comments:

  1. I'm glad she's home. St. Patrick's Day greetings to the DeWitts and Swaneks...and my favorite, polydactyl Deity!!

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