A Christmas Miracle!

 

On November 1, we were told I would be starting Immunotherapy very soon to continue fighting these stupid tumors. Just needed to get the insurance to approve and we’d be good to go. Easier said than done! Our insurance didn’t play nicely (at first) they sent the 2nd denial letter to Dr Low just before Thanksgiving and it said “Final Notice” he  was very frustrated, just as we were. He normally has a chance with insurance companies to talk to a peer to plead his case. But they didn’t even offer that. They just said “FDA does not approve this treatment for that type of cancer” the trouble is that there aren’t many studies done for my type of cancer and probably never will be because it’s so rare. So what are we to do? We’ve been so upset over it for weeks now trying to figure out what to do. Once we found out they denied it, we applied to the drug company to see if they would provide it compassionately. We’ve been waiting and waiting on that and they keep saying “it’s still under review” fast forward to last Thursday when Dr Low said “it’s time to pull out all of the stops”. Reach out to your contacts at the insurance company, etc. maybe you can get somewhere taking that route.  Brandon has a friend who knows the CEO of our insurance company. So he composed a letter, pleading our case and sent it off to his friend to pass along to the CEO. By Friday night our case had been passed along to the chief medical officer of the company who called us on the phone! He explained more in depth why it was denied and then said he was going to be looking further into our case Monday morning, talk to the drug side of the company, and we should hear back from him before weeks end. Fast forward to this afternoon when Brandon called me and with a lot of emotion said, “we are approved”! He had just heard back from our “new friend” at our insurance company. I’m not sure all that went into making this happen. I do know many people have been praying for a miracle. I desperately need to be treating these tumors that aren’t getting smaller on their own. And we feel like a Christmas Miracle happened today!! We are so grateful for the chance to plead our case to our insurance company and for those who took part in pushing it through. And especially grateful for your prayers. It feels like such insult to injury to have to fight so hard and advocate for yourself when you’re already dealing with a disease like cancer.  But today…we celebrate a victory! 

Some not awesome news….

My scans from yesterday showed that tumors around my lungs and windpipe are growing faster than before. My airway is becoming smaller and smaller. I’ve had a hard time breathing the last few weeks and this explains why. This problem cannot wait for the immunotherapy to start working. We don’t have that kind of time. I sort of need to breathe!

Some good news…

My radiation doc, Dr. Grant called the pulmonologist the next building over to discuss my case. He said he felt I needed to have a stent placed in my airway to open it up and buy some more time while the new therapy has time to work and hopefully shrink the tumors pressing on the airway. Within a couple of hours Dr Grandio from pulmonology was calling me and the procedure is scheduled for December 26. It cannot come soon enough! I’m excited to be able to breathe better.

Some more good news…

The tumor in my spinal cord that we did 25 rounds of radiation on back in September is stable! Yay! That was a relief. It could still shrink some more over the next few months. And again…hopefully shrink with the therapy I’m starting.

I will start immunotherapy on December 31 and receive it every 3 weeks. It goes in through an IV like chemo. We realize that like any treatment, there is no guarantee. But we are hopeful and it’s the next best thing to try. It has shown to be successful for people with rare types of cancer…and especially in cases where chemo or other treatment have not been effective. Trying to be positive and not let the dark thoughts enter into my brain. 

It’s been a whirlwind of a day and I’m just so thankful. Thankful for Brandon for being my advocate and going to bat for me! Thankful for all of the prayers on my behalf. Thankful for you! 

Prayer requests: 

A prayer of gratitude for our little Christmas miracle.

And a request to let us know how we can pray for you!

Have the best Christmas-

Love,

Jenny ❤️💚

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