This is the amazing journey of our two miracles. John Craig was born on November 30, 2005 at 24 weeks and 5 days gestation. He weighed 1 pound 8 ounces and was 12 inches long. John is a true miracle and an inspiration to all that meet him! Hope Amanda, our perfect little girl, is currently recovering from two brain surgeries to remove a 6cm mass from the center of her brain. Hope represents everything good in this world and she too is an inspiration to all.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.
Jeremiah 29.11

Tuesday, January 04, 2022

New Med

We’ve been doing a lot of napping….and sitting by the fire❤️  Healing and recovery at home is soooooo much better than at the hospital. 
Last week we met with our neuro oncologist (who is an absolute angel on earth) to discuss our plans moving forward. We were given two options….chemotherapy for a year….which would wreck havoc on her immune system and she’d lose her hair or a trial that we could enroll in. Two kids get the new oral medicine which is taken twice a day for two years (side effects are a severe rash/acne) and the other one gets the placebo (which in this case is chemo.) I asked Dr. Hoffman, if this was your daughter what route would you choose?  Hands down she’d go the oral medicine route. That’s the route we choose however we were not comfortable with the trial….we did not want to be the 1 in 3 that got chemo. With that being said, she did all the work and got the medicine approved by our insurance (since we won’t be doing it as part of the trail.)

We got word last night that our insurance approved the medicine she'll be on for the next two years. They denied it at first but our oncologist appealed it🙌🏼🙌🏼🙌🏼. She'll go in for lab work, an EKG, an ECHO and an eye exam in a couple weeks before starting it. Then we have to go every three months for those same tests for at the least the next two years. 

While we don’t know God’s plans, we continue to trust them. 

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