Phoebe was accepted into the Undiagnosed Program at the NIH in Bethesda, MD!!!
Her immunologist sent a referral letter with a large packet of her results, images and pictures down in May. They had initially told us they would be making decisions in October, so when we didn't hear anything by the end of December we just figured she didn't get in and we wouldn't hear anything from them.
Last week while I was at school I received a voice mail from her Immunologist that stopped my heart. "You need to call the office back immediately." Knowing that her doctors are always working on her case, trying to figure out what tests to do next and that labs still have samples of her blood I became scared. What test did they run? What results do they have? Should I leave school and miss check off? With fear and worry racing through my mind I called the office back.
"Mrs Green, today we received a letter from the NIH. Phoebe was assigned a team of doctors with the Undiagnosed Program. I have your case managers contact information so you can call them right away."
Phoebe has a team at the NIH! A team that opens up specialists, researchers, science, testing, information and services that have been unavailable to us for the past 3+ years!
I spoke to the case manager this week about what our next step is. The lead doctor on Phoebe's team wants all of her medical records from birth. Once she reviews them she will set up a plan of tests she wants to run, specialists she wants us to see, when she wants us at the NIH and how many days!
The best part...as if there could be a better part to this, but there is...everything at the NIH is government funded and isn't done through insurance! Which means every doctor we see, every test they run, every procedure they do at the NIH is 100% free for us with no insurance denials! Our only expense will be gas, food and lodging for our time down there!
While this doesn't take away any of Phoebe's medical expenses while at home with her normal team of doctors and hospitals...this is still a huge relief!!
Now we just have to receive the forms so we can release her medical records to the NIH and wait to hear when our appointment will be!!
Thank you everyone for all of your prayers, love, encouragement and support! You all have helped carry us to this point! #RoarWithPhoebe
#ShareYourEars and Disney Parks will donate $5 - up to a million dollars - to Make A Wish to help make more wishes come true for children living with life threatening illnesses!!
"Don't let fear keep you quiet. You have a voice, so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence."
-Meredith Grey, #GreysAnatomy
It has been a month since Phoebe was hospitalized for four days for mouth ulcers and the perilous toll they were taking on her body. The pain from these ulcers was so severe that she did not eat or drink for three days, dehydrating her, and causing her glucose to drop to dangerous levels. The cause? The medicine she was on to try to give her relief in her normal daily life.
At her follow up discharge appointment with her immunologist earlier this month, they officially stopped Phoebe's medication. The ulcers are a side effect that effects 15% of patients. With Phoebe falling into this 15% and how severe they affected Phoebe and the condition it put her in, her doctor felt that it is not safe to restart the medication.
While I absolutely agree it is not worth the risk to restart this medication, the decision to stop it has put us back to where we were in October... no answers, no treatments, and no relief from the pain and swelling for Phoebe.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.