Update March 29

They took the breathing tube out Thursday morning after they did a repeat CT to check for bleeding. There was no bleeding but some increased inflammation so they started her or a course of steroids (her we go again with the moodiness..ugh :) JK) She was not able to eat until Friday. That made for a rough night Thursday night, but we got through it. Jen's sister and mom have been helping out too. She did sleep off and on a lot Thursday because of all the meds and anesthesia she got. Friday she was able to eat and they moved her out of PICU to a regular room. Julie's right eye is turned inward a lot more than before surgery and she has a right sided facial droop and slurred speech because of it. The doctors feel that once some of the swelling goes down and the nerves move back into their normal places over the next few weeks, this should all improve. She is not able to sit up as well as before surgery but it is still better than it was before she had the biopsy. She is very weak and can not even stand as well as before...again this should get better. The neurosurgeons say that it was Julie who decided she wanted the tumor out, since when they went back in the second time and it would not stop bleeding until it was gone...LOL The surgeons also stated that they were able to access the tumor with out really disturbing the nerves that were being effected by the tumor.

The plan not is to start radiation next week. We meet with her Radiation doctor tomorrow...I will keep you all posted...Deidra

Praise God!

PRAISE GOD!!! They were able to remove the ENTIRE tumor. It was a long process, over 12 hours. They did an MRI scan part way through the surgery and decided to go back in and remove more of the tumor. Apparently while they were in there the second time, the tumor started to bleed and as they attempted to control the bleeding, the only way to do that was to remove it all. So it is GONE. They left Julie sedated over night, with breathing tube on a ventilator so that she would not move around a lot, which would increase her blood pressure and put her at risk for bleeding in her head (Julie is quite the lil fighter, it took them several different med combinations to find the ones that would keep her sedated). She was doing well this morning and they did a CT scan to make sure there is no bleeding. If there isn't they will take out the breathing tube and wake her up. The best news is that she is still moving both sides of her body. The left does seem to be a bit weaker right now but it is still hard to tell, the docs do not think that she will have any permanent lose, until she wakes up we won't know.....so til then. Deidra

Surgery Today 8 AM (March 23)

Julie goes into Surgery tomorrow morning at 8am to attempt to remove "as much of the tumor as they can". There are many risks to this surgery, number on as with most surgeries is the risk for bleeding, the other is permanent total loss of movement on one side or the other of her body. We are hoping for the best. The doctor also said it is possible that opening the tumor could put her at risk for the cancer spreading. I am very worried about her...please keep us in your thoughts and prayers. Deidra

Update March 19

UPDATE...Julie had a repeat MRI of her brain and spine on Friday March 18th. They were also going to do a Spinal Tap but decided not to at this time. The tumor may have shrunk just a tiny bit, but not much at all. It is showing signs of death, or necrosis. It also had some bleeding present and since Julie's platelet count was a little low, they went ahead and transfused her with platelets just to be safe. They were also able to do a DEMRI (Dynamic Enhanced Magnetic Resonance Imaging).  This will help them see what nerves in her pons are being affected by the tumor and will help theem determine if surgery is safe at this time. Julie's doctors, Dr Bronicher and Dr Dewire, believe that the nerves are not being invaded by the tumor but otherwise just being "pushed to the side". The DEMRI results will let us know for sure. 

Julie's chance of long term survivial depends on the removal of the tumor since PNET tumors are Stage 4 and can be very aggressive. So they are going to recommend to the neurosurgeons to move forward with surgery. 

If the tumor is invading the nerves then removal could cause Julie to have permanent partial to complete loss of the use of her left side. If the nerves are not being invaded than she risks only some temporary loss of her left side. Of course surgery to the pons is very risky and permanent loss is always a possibility. They hope to make a desicion regarding surgery by Tuesday. If they decide to go ahead with surgery, then she will have it sometime next week. Keep us in your prayers as always, and I will update again when we know more. Thank You All, Deidra 

March 15 Update

ANC was zero again today ut no fevers (so far, we hope it stays that way). Here Hemoglobin ( part of the red blood cells which carries oxygen in her body) were low and Friday so Julie had to have her first blood transfusion. They are also watching her platelets (these are the cells that help your blood to clot so you do not bleed to much) they were a little low today. She is doing well except having moments of irritability. It took us about on hour to finally convince her to wear her respirator mask. She only has to wear this in public places. She looks so cute with it on. They will recheck her counts on Wednesday. If her platelets are low then they will give her platelets (part of a blood transfusion). She can stay out patient during all of this as long as she does not develop a fever, we are praying she doesn't. She got an out patient dose of one of her chemo drugs today. We are still scheduled for the MRI and Spinal Tap on Friday...can't hardly wait to see the results. Hoping for GREAT NEWS. Til then....Deidra

Update: March 9, 2011

Julie has been in-patient again for more chemo. She has not done as well with the chemo this time. She has been more irritable and has had more vomiting then before. We get to take her back to the Target House tonight and manage her nausea and vomiting there. She maybe on an out-patient IV pump for fluids. Jeanethe has had a cold and had to go to a Walk-in Clinic here in Memphis to make sure she did not have anything that could present a problem for Julie, such as Strep Throat. Jeanethe was cleared of that but started on antibiotics anyway.
I would like to let you all know that the prayers and chemo must be doing something because where a month ago Julie could not sit up on her own or use her left side, she is now sitting up alone, using her left side a lot more and even walking assisted with a walker. She is also off the steroids. She will be getting another MRI of her brain and spine and Spinal Tap on March 18th. If the tumor has shrunk, they will propose surgery to the neurosurgeons again. Keep the prayers coming we need all we can get. Deidra

Update: March 2

Update...Julie has just finished her dose of Methotrexate which we came to the hospital for on Saturday 2/26. This is one of her chemo drugs. This is the first one they usually give but we were unable to start with this one because the steriods had cuased Julie to develope a case of fatty liver which caused her liver function tests to be elevated. So we had been weaning down her steroids since we first started chemo (she is almost off the steriods completely...yea). Her liver function test finally came down to allow her to start the Methotrexate. when patients get methotrexate it taked 24 hours to infuse the drug. Then they have to remain in the hopsital until the methotrexate is with in a certain safe zone in her system. Julie's is safe enough now to go home today. She will still be on IV infusion on a take home pump in her "backpack". They will check her levels again as an out patient tomorrow. We are thrilled because we do not get much rest in the hospital. Julie's ANC and other blood counts are good for now. They will watch these over the next few days. Julie has done great on the chemo drugs with minimal nausea or vomiting. She is just now starting to lose her hair. She is a real trooper. Well until next time...thank you all for your suppport. Deidra