Autoimmune Lymphoproliferative Syndrome
They believe we have a diagnosis. Phoebe's results show she has a very rare condition that affects her liver, spleen, red blood cells, white blood cells, lymph nodes, tonsils, and puts her at an increased risk of lymphoma and an even higher risk of blood cancer. There is no treatment, and no cure.
All of the doctors have been wonderful, most especially the immunologist who got this ball rolling to lead us to this diagnosis. He put pieces of this puzzle together and took a shot in the dark and turned out to be right. We spent a lot of time with him last week going over all of the test results we have for Phoebe. He said he was deeply sorry for this diagnosis and that he had hoped that it wasn't what it was. He said what Phoebe's counts and tests are showing is that her body and immune system are a runaway train and we have no way to stop it. All we can do is handle each thing as it comes.
There is still more testing to be done. This is a genetic disorder so we will all need to go for genetic testing to see exactly what gene this is, if any of the other girls have it, and what this could mean down the road if Phoebe ever wanted to become a mommy. And we still have to get the test the insurance company won't cover for the "official diagnosis".
We go for more blood tests tomorrow to check her B12 and lipids, and we should be getting the results from last weeks blood test back too.
The immunologist and oncologist are both disgusted with the answer we got from the insurance company yesterday. They said there is nothing more we could give them because they have everything we have. It just comes down to them not wanting to pay because of how rare this condition is, and that the only place that does this test is Cincinnati's Children's Hospital.
So we got what we have been praying for, an answer. We are limited with what is known about this and how many doctors have heard of it/dealt with patients who have it. We have an excellent team of doctors in place, Phoebe adores them all and I trust them completely. And they don't hesitate to consult with each other, and other doctors through out the country on what to do next.
So now I ask for you to pray that Phoebe can help teach these doctors about this. The more they can learn and know about this, the more people they can help. We want them to learn from what she is going through and will go through so they can help other children who develop this and hopefully help keep other parents from going through this long drawn out fight we have had to just to get blood tests done.
Photo: Trying to do happy fun things through it all