Has anyone heard any updates about Phoebe??

My Dad recently had a stem cell transplant, so I follow Be the Match on Facebook. A post about Phoebe just came up on my newsfeed! I pray they find a match for her soon!

Last I saw was one from Oct 20 on their FB page with some positive news.

We received some good news today--pathology from the spinal fluid they took yesterday showed no HLH-related cells; normal in other words. This is a big, positive change from last week and we're hoping this continues.

Thank you all so much for checking in. We are still in Children's. We had to decrease her steroids this week due to leg psi and muscle ache, as well as increasing blood pressure. We are hoping that her HLH can still keep under control even with the decrease.

She has another lumbar puncture next week and that will hopefully be clear again. That is our next big hurdle!

Her story is being shared all over the country and we recently heard she may be part of their national camping to help raise awareness for the need for minority matches. Please feel free to like our Fight for Phoebe Facebook page and spread the word about bone marrow donation.

This just showed up in my feed as well (I've been on the registry for over a decade).  I shared it.

Phoebe is in my prayers. Hugs, Mom!

Thanks for the update! I was also wondering how she was doing. Sending prayers and positive thoughts to your family.

You are both in my thoughts. I hope for continuing good news.

Glad to hear some positive news. A fellow teacher donated bone marrow at the end of Sept. for a young man. His wife had had two bone marrow transplants but died about ten years ago. He remained on the registry and got a call last summer that he was a match. I co-teach a class with him (high school math) and he told his story to the kids and it was amazing. These kids' responses were amazing. He's a big/tall man and ended up donating 10 lbs of marrow, which was the largest donation ever at that hospital.

I hope Phoebe finds an amazing donor like him!

Lisa D.

Glad to hear the good news on your update. Sending prayers & positive thoughts.

Fight for Phoebe on Facebook is a public page. We are managing it along with someone from Be the Match. She has posted some really good information about transplant and the process, and why it is so important. We feel so blessed that it has been shared so readily, and welcome any more shares of the information.
the most important thing to note is that it is totally free to register if you are between the ages of 18-44, and minorities have a much more difficult time finding a match because the vast majority of those in the registry are Caucasian. The more donors are available for everyone the better, and we are hoping that increased awareness will lead to the registry having similar results for all races and to ethnicities. 

If you are between the ages of 18-44 a swab kit can be ordered and comes right in the mail and takes 10minutes to complete and mail back in. My school is doing a trick or trot tomorrow and all proceeds go to Be the Match to help that organization. That information is also on our Facebook page. 

Yesterday was the lumbar puncture and no results yet.
Last night she had. 4 episodes of diarreah with bloody stools (sorry for the TMI). They have been running all sorts of tests but have not been able to verify the cause or how to treat it. She received her 2nd transfusion in 24 hours as well as platelets for bleeding. She seems to be ok, but we wish we had some answers about what caused the bleeding and how to treat it appropriately.

The poor pet. Hugs to you all. I can't even imagine what you are going through. All I can offer is that I think of you often and am sending wishes that Phoebe gets better soon.

Oh, my your poor sweet girl. I'm continuing my prayers for Phoebe and your whole family. Thank you for taking time to update us.