Update Feb. 19

Early Friday morning Julie spiked a fever. So we ended up as a in-patient for antibiotics. When they checked her blood counts her ANC (Absolute Neutrophil Count) was 0. Neutrophils are baby white blood cells that will mature and fight infection. Since Julie had no neutrophils she is at very high risk of developing a blood infection (or sepsis). She was started on antibiotics before they even knew her blood count. She has not had a fever since and her ANC was up to 200 today. I believe they are waiting til it is > 500 to send her home. Anytime her ANC is less than 500 she will need to wear a mask while in public places. We will see how she does with this. She has been a little trooper through all of this. We all had a great time, playing with play dough tonight, she laughed more than she has in a long time. Til next time, Deidra

Update Feb. 13

The doctors did a repeat MRI on Thursday and determined that Julie's tumor is to large to proceed with attempting a removal of all or part of the tumor at this time. If the tumor cannot be removed than it is less likely that the chemo and that radiation will completely kill the cancer cells. The PNET has a very high rate of reoccurring and if that occurs it is usually not a good thing. She also had a spinal tap that showed there are currently no cancer cells in her spinal fluid...THANK YOU GOD. Julie has just finished her first few doses of chemo, she has so far, done very well. The doctor's hope is that after 2 rounds of chemotherapy (each round is 28 days) that the tumor will have shrunk enough that surgical removal of all or part of the tumor will be an option. Radiation is still going to be part of her treatment at some point, which is why she will be here close to a year. I have had several people ask me what it is that the family needs money for.  Please see the revised heading on this blog.  Deidra

Update: February 10

Julie is being admitted this evening as an in patient at St Jude. She is scheduled to have an MRI and spinal tap in the morning. The MRI will let the doctors know if she is a candidate for tumor removal at this point. If the tumor is to large to safely remove it the idea is to start high dose chemotherapy to try and shrink the tumor. If the tumor becomes small enough to remove then they will do so. Once the tumor is removed Julie will then start focal radiation (tumor site) treatments. The spinal tap will let the doctors know if there are any cancer cells in Julie's Spinal fluid. If there are cancer cells in her spinal fluid, due to the high rate of tumor relocation with the PNET, Julie will need not only radiation at the tumor site but also to her entire brain and spine (this is called Cranial/Spinal radiation). If Julie requires the Cranial/Spinal radiation her chances of it causing mental/cognitive issues is higher. Thanks for your prayer...more to come Deidra

Update: Feb. 7, 2011

UPDATE....Julie's diagnosis is the PNET. The doctors are still debating on a course of treatment. The usual course of treatment for PNETs outside the brainstem are high dose radiation and chemotherapy. Because of Julie's age and that her tumor is in the brain stem they are looking at the best course of treatment that will cause the least amount of cognitive damage in the long run. Since it is a PNET Julie will need to be here a minimum of 9months...possibly more. Thank You and I will keep everyone updated as things happen. Thanks again, Deidra

February 7, 2011 4:01 PM

Update from St. Jude's

This is Julie's Grammy, Deidra Wolf, Julie has undergone lots of tests here at St Jude Children's Research Hospital here is Memphis TN. She had a biopsy of the tumor which is located in the pons, part of her brain stem. She was diagnosed with a DIPG oterwise called a Pontine Glioma, but after a more exstensive MRI here they think it maybe a PNET or Primitive Neuroectodermal Tumor. Once we have the biopsy results back we will know for sure. Which ever of these tumors it is, either one is rare, and due to its location is hard to treat. With the DIPG treatment consistes of radiation and oral (clincal trial) chemptherapy drugs. If it is a PNET treatment is risky removal of the tumor followed by radiation of not only the tumor site but of her entire spine and intravenous chemptherapy treatment which will have them all here for about a year or more.  Lil Julie is a beautiful little girl that despite the problems this tumor is presently causing her is still very full of life. Please help her, even if all you can do is pray...Thanks You Deidra

February 4, 2011 12:32 PM