Sept. 13 Update

I am so sorry that I have not posted an update in so long. My RN job I was working in Memphis had me working VERY LONG hours and I was not able to participate in Julie's care as much as I wanted to. Jen had been having to take Julie to all of her appointments and care for her in-patient without me due to my work schedule. I have since returned home to New Mexico since Julie only had one more round of chemo. So now that I have a few extra moments I will update you on how she is doing.
About the first week in August or so they removed the sutures from Julie's right eye. Do to it being sewn shut for so long it had grown closed, so the next time Julie is sedated for any procedure they plan on surgically opening it back up. Julie seems to see ok though.

On August 10th Julie had another MRI and Lumbar puncture. And once again by the Grace of God there was NO detectable cancer. I am so thankful for all of our answered prayers.

Around August 20th, Julie received her 3rd round of chemo. Even though Julie needed to receive blood transfusions and platelets as expected, her counts seem to be rebounding very quickly. Thankfully Julie has not had as much nausea and vomiting as before. She is a real trooper.

Julie went in-patient again on September 9th for her fourth and final round of chemo (Hopefully). She was discharged on the 11th. Now all we have to do is wait for her blood counts to drop and return to normal and pray for no fevers. Once her blood counts are within normal range they will do another MRI and Lumbar puncture and as long as they are clear she will be able to return home.

Julie's birthday in October 9th so I am hoping and praying that she will be able to be home to celebrate her 4th birthday with her ENTIRE FAMILY.

So I am not working as many hours and will do my best to keep in touch with Jen as she cares for Julie on her own so that I can leave updates in a more timely fashion.

Please continue to PRAY, because IT IS WORKING.

Thanks EVERYONE and God Bless,
Deidra Wolf aka Grammy

July 6 Update

Well Julie came home from the Hospital On Monday after her Chemo, only to end up readmitted Thursday June 30th with a fever and a low ANC count. She is still in-patient presently (7/5 she missed the fireworks this year). Her ANC count has been 0 since Sunday and her platlets (cells that help your blood clot so you don't bleed to much)and hematocrit (iron carrying blood cells) are low too. She has received 2 units of blood and 1 of platlets. She has not had a fever since Sautraday though. I hope her counts come up soon, I miss her being home. She will not get more chemo until her counts level out. But at least we know that the chemo is doing its job. I will keep everyone posted.
Deidra

June 21 (second update)

Julie was admitted Friday night for the first of a minimum of 4 rounds of chemo (a round lasts about 28days). Some doses will be inpatient like this one, others will be outpatient. Hopefully she goes home Monday but it has been hard on her, she has not kept anything down. She is resting comfortably right now. We will see how her blood counts do. Pray for no fevers. I will keep you all posted. Grammy 

June 21

This is how devastating Julie's cancer can be....Julie has a lil Facebook Friend named Talon who has the same type of tumor as Julie just in a difffernt spot in his brain...8 weeks ago he was cancer free now it is back the size of a golf ball. PLZ pray for Talon and Julie

May 20 Update

Well I have good news to report. Julie finished her radiation this week, got her new chair and her braces for her legs. She is so strong and so rambunksious that it is getting harder to keepup with her. She had an MRI and Lumbar Puncture today...any PRAISE GOD....NO CANCER WAS SEEN in her brain or spine. Her Lumbar puncture was clear of cancer cells too. The is such a blessing. Thank you all for your prayers. Julie gets some time off before she starts she chemo. She will get 3 rounds that I know of so far. I will keep you posted...Deidra

Thanks to the NMSU Theatre Dept .and Audience Members who donated at the "Winnie the Pooh" performances

Due to the very generous audience members who attended the production of Winnie-the-Pooh and responded to our "passing the hat" during intermissions, we collected a total of $1,000 from our four public productions. We presented the money to Eddie Wolf, Julie's dad, at the end of the May 8 show. Again, we owe this very successful donation campaign to the kind, compassionate, and giving people who responded to our request for donations for Julie. We thank everyone who donated to Julie!
I also want to thank Julie's uncle, Michael Hillis, who informed our audience members about Julie's condition during our intermissions. Thanks also go out to Eddie, who attended every production of Winnie-the-Pooh and to all of Julie's family who came to the show, helped us publicize it, and supported our efforts.
Connie Breding

Mother's Day

Not much to report this week. The doctors are a bit concerned about Julie's appetite since she is losing weight each week. They started her on Ensure shakes daily and a calorie booster to add to some of her food. She is still not back to her pre-diagnosis weight but she is losing weight faster than they would like. She will need the few extra pounds for when she starts Chemo again in a few weeks. We are still waiting on her new stroller/chair and her leg braces. Should be in this coming week.

Julie is missing her "Mom" (Jen's mom, that's what she calls her other grandma) this Mother's Day. Just as Jen and I are missing EVERYONE back home today. We want to wish all the MOM's out there a very Happy Mother's Day....

NMSU-A's Theater on the Hill has been doing a production of Winnie-the-Pooh the past few weekends. They dedicated the show to Julie and have been taking donations and encouraging children to write cards to Julie. This is such an inspiration to me. I can not thank Connie Breding, the Guild Members or the Cast enough for doing this for her. Just the idea that Julie's prayer chain has grown is the VERY BEST MOTHER'S DAY PRESENT EVER....Thank You to EVERYONE for your prayers and support during this time.

Update May 3

Well Julie had a good week, but an even better weekend. She is tolerating radiation like a champ. We found out Friday about the Memphis in May or Beale St. Music Fest on Friday night. When we heard Kesha was playing, Julie wnated to go. Julie loves listening to Kesha and when she was able would dance to her music. She would even try to imitate Kesha's dance moves. So we got tickets and ventured out into the wilderness Saturday afternoon. We got there about 3:30 in the after noon. We went straight to the stage that Kesha would be performing at later in the evening. A group called The Sick Puppies was up on stage performing when we arrived. When they quit playing we and the crowd diminished we edged are way to the front of the stage. We were up front but stage right. We stayed there for the next group Hinder who Grammy likes. One of the security guards got her a couple of guitar picks from Hinder. Julie then wanted to go get something to eat so I (Grammy) stayed in our spot. The next group to come on was 8Ball and MJG a rap group from Memphis that none of us had ever heard of. I helped the spot but the crowed started getting larger and larger and very pushy, so Julie and Jen retreated to a safer place. The next act to come was Ludacris. I asked one of the security people where we could get Julie so she could see Kesha, the headliner of the night. He pointed to a pavilion behind me and said we can take her to the disabled pavilion. So I inched my way through the crowd of wall to wall people. I have never seen that before...forget personal space...Anyway I found Jen and Julie and we made our way toward what I thought was the disability pavilion, come to find out it was the VIP pavilion, the security guard at the VIP pavilion told us the disability pavilion was completely full. So Jen and I went back to the side of the stage that we were at and talked to a different security guard. I explained that Julie was really wanting to see Kesha perform, but that she was scared of the large crowd. I asked him if there was anyone we could talk to to get into the VIP pavilion. HE said "I will be back in a few minutes". He came back and had us meet him at the gate to the back stage area. He took us back there and put us in a dinning area and told us he would be back for us soon. There was another couple sitting at the table with us. They asked us about Julie and we told them her story and that she wanted to see Kesha perform. The couple had met Kesha earlier in the day and told us how nice she was. While the girl was showing us the pictures they got with Kesha the gentleman got up. When he came back he had Kesha's assistant in tow. Kesha's assistant said that she heard that Julie wanted to see Kesha so she took us to her bus where we met her and got to get pictures with her. Kesha even had us up on the side of the stage for her show. It was fantastic. Kesha was so so so very nice. She even gave Julie a hug. I like Kesha before all this but now I love her. THANK YOU KESHA SO MUCH for giving this memory to Julie and to us. I am forever grateful.

Til next time...Grammy

Update April 28

Hello everyone, sorry I missed posting last week. I have been busy at my new job and then Julie's Daddy, Grampy and Uncles Josh and Chris came to Memphis to spend Easter with all of us. We had a great time. We celebrated Uncle Josh's early birthday party at the Great American Pizza Co. Julie raced go-carts with everyone (well Grampy was driving). Julie took everyone to the zoo and showed us all the animals. Julie's favorites are the Penguins, Elephants and Wolves. We ate ate her favorite restaurant The Blues City Cafe on the Famous Beale Street. They treat Julie like a Princess there. We then had a cookout on the patio of the Target House and colored our Easter Eggs. On Easter Sunday we went to a pond and fished and played with the ducks. We then went back to the Hotel where Grampy was staying and went swimming. It was a great weekend. Julie was sad to see everyone go.

Anyway, Julie is doing GREAT. She is handling the radiation treatments very well. She is getting used to the routine. She continues to get stronger and stronger everyday. She goes to her physical therapy and occupational therapy 3 times a week. Julie's right eye is moving more and more too but she recently scratched it so we are having to use antibiotic drops to prevent infection. The doctors seem to think that she does not have normal feeling in her right eye and face. This maybe why she scratches at her right eye and nostril (she has scratched her nostril as well). If you think about how it feels when your face is numb after a dental procedure I think this is what it may feel like to Julie. I remember how it felt funny to touch as the numbing stuff wore off. I think this is how it feels to Julie so she rubs those areas because it feels different. (Does that make any sense???). Julie is going to get a new stroller/chair to use because the stroller she has is to small for her. St Jude is ordering her a Pink one. Her Leg braces should be ready either later this week or next week. All in all she is such a trooper.

I want to let everyone know that New Mexico State University Alamogordo's Theater on the Hill is dedicating their Children's Theater Production of Winnie the Pooh to Julie. The play is this Saturday and Next Saturday at 7:30 PM and the next two Sunday's at 2:00PM. If you can make to the production I would really encourage you to attend. I am so grateful for Connie Breding and the Cast/Crew for doing this for Julie. I can't wait to see the DVD when they send it. Until next time.....Grammy

Update: April 15

Julie is tolerating radiation very well so far. She is still weaker on her left side than she was before the tumor removal, so the physical therapist is going to fit Julie with leg braces until she gets her strength back. She is also getting fitted for a special stroller type chair that will fit her better than the Walmart stroller she has now. Her right sided facial droop is a lil better and she moves her right eye more although it is still turned way inward. She has a long road of recovery ahead of her, so keep the prayers coming...thanks. Grammy

Update April 7

Well Julie will not start radiation til Wednesday (I'm not sure why. I have been working so I have not been able to go to her appointments. I will go to her appointment on Friday.) She is about the same with the facial droop and left sided weakness, but I see her personality returning. More to come....Deidra

Update April 6

ulie will start low dose radiation to both her spine and her head tomorrow (4/4/11). She will get radiation Mon-Fri for the next 6 weeks. She will then get a week off and they will do another 3 rounds of chemo (a round last about 28days). So we are still looking at being her about another 6 months or so. This all depends on if the cancer does not return. I know every one wonders why she must still have radiation and chemo even thought the tumor is gone. A PNET tumor is an aggressive Stage 4 cancer...this means that it has a VERY high incident of returning and or causing cancer somewhere else in her body. So the radiation and chemo are done to try and ensure that they kill the cancer. Once the cancer is gone Julie will still need to return to St Jude every few months to be sure that the cancer has not returned for the rest of her life. Julie is still not as strong as she was prior to the tumor removal. She still does not have as good of balance as before and her legs are weaker. She does however get a little stronger each day. She still has the right sided facial droop, which causes her speech to be just a lil bit slurred and her right eye is still turned way in. The doctors still feel like this will improve over time. She will continue to receive speech, OT and PT weekly, even when we return home. Julie is proud that she has tattoos, yes permanent tattoos...lol. They were put there Thursday during her MRI. They are only very small dots on her head and spine...these will be the areas that they will hit her with the radiation. But she is proud of them none the less. She has i have tattoos now like my momma. The MRI on Thursday showed that the swelling from the surgery has reduced but that there is still some bruising to her pons. So it is still healing, but it is almost back to it's normal size. Today was Julie's last day on the steroids..yea!!! Well I will keep you all post. Thanks as always, Deidra...aka Grammy

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

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

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