Courageous

 

Courageous

[Original post from Thursday, November 5th, 2015]

Feeling over anxious about starting my 7th (and final) go at a new treatment for this stupid disease. Had to listen to my kids tears tonight on the phone because they don't understand and want mommy to come home. I'm 3000 miles away from them. I have to miss Jessa's 13th birthday. We're getting blindsided with additional costs that we hadn't planned and saved for because we didn't know, and I was was told 3 different times today "oh man, your scans are bad, do they think it will still work?"

Part of me just wanted to throw in the towel. A big part of me if I'm being authentic. It's too much, the boulder on my back is too heavy and I'm all alone. Then someone called saying someone was dropping off food to Cory and the kids, and someone else called saying they were going to babysit and help. It reminded me that I'm not doing this for me, this fight is for all of you. My family, my kids, my friends, my church, and my God. I am not, and never have been alone. I have an army fighting behind me that I am so blessed and thankful for.

Today I got got dozens and dozens of encouraging messages and calls. People in my corner fighting, and pleading, praying, warring. This journey sucks and battles have been lost, but we WILL win this war. Time to search even deeper down and be #courageous. Let's do it.... #Imreadynow #wewar #20soc #stupidcancer #nyc #miracleshappeneveryday #TEAMAMANDA

Good news..yes, you heard that right, good news!

 

Good news.. yes, you heard that right, good news!
[Original post from Thursday, October 15th, 2015]

I am happy to finally report some GOOD news. Yes you heard that right. After 7 weeks of being sick as a dog from I.C.E. chemo, insurance finally came through and on the first appeal! There are reservations and contingencies, but their biggest fear is that they will pay the $13k a month for my drug alone, and then I will be passive at seeking trials as they open in the U.S. sticking them will unnecessary payments.

So they offered to cover 90% of my treatment for 90 days. After 60 days, the hospital will have to send updates showing probably cause. Basically they have to show that the expense of the medicine is worth it because it's having a significant impact. The second part is showing trials still aren't live with the drug in the U.S. If both of those clear between the 60-90 day mark, they will automatically sign to cover 90% for the full year of treatment. Hallelujah!!

I still have hair!! Some bald spots, but can't complain!

To make the deal even better, because the drug is off trial in the U.S., my doctor has tentatively agreed that if I do well the first two rounds (6 weeks), he will let me self administer the shots so I don't have to keep flying to NYC every 3 weeks.

If that's not good enough, I just hit week 7 of chemo, which at this point last time I was bald and shiny as a bowling ball. I am happy to report (at least as of now) I still have most of my hair!! I am officially done with chemo FOREVER. We're flushing it from my system for the next 30 days to start my new mononuclear antibody immunotherapy treatment.

So now my chemo will cost $1250 every 3 weeks rather than $13k, and I might not have to pay to fly to NYC every 3 weeks! So thankful. My flight in November is covered thanks to my sister-in-laws connections, as well as all my initial testing costs are covered thanks to Encounter leadership. If anyone has extra points they don't need, or connections, and wants to help get me back there for my second dose the first week of December- we would really appreciate it! Im working part-time to help cover bills, but the co-pays, medicines, and tests still add up so fast (on top of life). We're so grateful for the insurance coverage, but that's still $1250 for medicine alone every 3 weeks, can't handle airfare on top of that. Yikes.

My new job is AMAZING!! We are currently preparing for our walks in Palo Alto and San Jose the next two weeks. Seeing everyone come together to fight blood cancer is truly touching. The staff is so warm and supportive. They decorated my desk and left me a bag of goodies as a welcome back today. Feeling extra blessed!

My desk is ofcourse all yellow!! So excited to use all my "sunshine party" stuff from my surprise party at my desk!

Support Amanda

 Support Amanda

*this is website is being archived for informational purposes re: recent podcast. being archived from a fan. stay tuned.

Amanda's Battle With Cancer

Amanda beat Hodgkin's Lymphoma in Spring 2013, but unfortunately it returned by Summer, and she learned at the same time she was pregnant which obviously complicated her treatment. She started on inhibitor drugs during the first two trimesters, harvested stem cells, and we were all so pleased to welcome a healthy bouncing Connor Lee on May 9th this year. The cancer is now back with a vengeance, and Amanda has already jumped back into her fight for life currently receiving 3 rounds of ICE chemotherapy combined with radiation treatment. This will put her in soft remission hopefully, allowing her to harvest the last of the stem cells she needs to bank. After a 90-day rest for her depleted body, her line of treatment then requires 2 months of hospitalization at City of Hope in SoCal. They will administer second line salvage chemo, radiation, and the life giving stem cell transplant. After discharge, Amanda must remain in the SoCal region for 4 months for her follow up treatment.

With a 2yr old- a newborn- a 11yr old bonus daughter- and with Amanda required to reside in SoCal for 6 months, Amanda and Cory for now have made the difficult decision to enlist the help of Amanda's parents with her care, and for the boys. It will be so difficult for these lovebirds to be apart, but it is Amanda’s best chance for a cure, and allows Cory to stay close to Jessa- care for their San Jose home- and maintain his career. He will be visiting SoCal every weekend possible, bringing Jessa when she can. Skype and Facetime will be huge tools in keeping their young family connected daily.

How Can You Help?

Amanda had been a ray of sunshine in all our lives, and we all will continue to share our love and emotional support, keeping her always in our prayers. While we can't control the cancer, or the daily toll this battle will have on Amanda, Cory, Jessa, Carter, and baby Connor we can help minimize some of their stress by reducing the financial burden of medical bills and daily living expenses. Open your hearts and help Amanda and her family through this difficult time. No donation is too small; even $5 a month can make a difference.