1/16/2009 8:55 AM
We were awake in the motel room from 3:00 – 4:00 AM. If we wake-up to go to the bathroom or anything, our minds have a million thoughts running through them. Anyway, we didn’t get to Devree until 8:00 AM today. We overslept.
I asked Shana, “What we should put in our blog. What is our game plan for today?” Devree immediately said, “Today’s game plan is to Get Out of Here!” Our sweet Devree wants to go home (She wants to close the door to her bedroom, and finally get some sleep).
We are so happy so see the day-to-day progress. Devree has been tired and groggy. Up until now we have been happily watching her sleep. But now she is having longer stretches when she is awake.
This morning Shana asked, “Do you want me to come over, hold your hand, and give you kisses?” Devree said, “If you want to. I don’t smell very good.” That sense of humor is more like the Devree we know and love.
1/16/2009 12:20 PM
We have some good news to share. Aunt Tammie has a friend in her Ward (church) named Season. We like that name. Unusual names are our favorites. Season’s daughter Chase was diagnosed with the same cancer Devree has when she was 10. Chase is now 12 years old.
Shana had a good visit with Season and then came back crying with happy tears. This is the first person Shana has talked to that really knows what this is like. Devree told Shana to not cry (Because Devree wants to stay positive). We had to explain that they were happy tears. Shana said, “This mother and daughter have gone through what we are going through. Chase got better!” (Then Devree’s eyes got misty with happy tears too)
Devree really does not like being “a sick kid” (she calls it). She said, “I hate when people hug me and cry like I’m going to die. I AM NOT GOING TO DIE!” I admire the spirit of my little girl. So you can all love Devree, she likes that, but you can’t cry like she is going to die.
Oh, back to Season and her story about Chase. Chase’s father got online and searched for the best hospital for treating pediatric cancer. It was St. Jude’s in Memphis, Tennessee. They emailed the doctor there that is the best with Devree’s kind of cancer. So Shana just did the same thing for Devree. Oh darn! We got an automated email response that told us that doctor was out of the office until 2/2/2009. The message also left a phone number, so Shana is calling that number. We are all excited for Devree to talk with Chase. This little girl will be able to answer all of Devree’s questions. That will be a wonderful resource to help Devree through this process.
I read this to Devree and asked her what she thought. She said, “You forgot to mention that I want a roommate that I can talk with.” So far, all of her roommates have been babies with breathing problems. Devree says, “That was sad.”
1/16/09 2:15 pm
Wow things are moving fast now. Aunt Tammie told us about a girl named Chase in her ward that had the same kind of cancer as Devree. Chase is 12 now and was diagnosed March of 2007. She has returned to "Normal" life. She goes to school and is back doing all of the things she loves. Chase's parents did lots of research on line and found out that St. Judes is the best children's hospital and the one that has the most cancer patients that have fully recovered. Dr. Gajjar is the best oncologist for Medulloblastoma. He has the most experience with this type of cancer and the HIGHEST success rate. His treatment plan only takes six months compared to 9-12 months here at LPCH. The protocol for Dr. Gajjar's cancer study uses stem cells from the patient and St. Judes thinks this is why they have such a high success rate.
So I emailed Dr. Gajjar. His email said he is gone till 2/2/2009 but left a phone for his administrative assistant and Tabitha who is in admitting. I called his assistant and she gathered vital information and said Tabitha was in a meeting but she would tell her. Tabitha got out of her meeting and Dr. Gajjar had phoned her to tell her that he wanted her to call us. So Tabitha called us and said we have to get a physician referral and they want it before they do her spinal tap that this hospital has scheduled for Thursday. St. Judes wants to do the spinal tap. So we may not get Dr. Gajjar as Devree's personal doctor but he is the head of protocol and we will be working with him and his group. I called Dr. Edwards to see if we could get him to refer Devree but he is in surgery. Basically Memphis here we come!!!
This is a link to information about the brilliant Neuro-Oncologist at St. Judes:
This is a link about St. Jude Children's Research Hospital ranked No. 1 pediatric oncology hospital:
1/16/2009 3:31 PM
I can’t begin to express how much comfort your comments have given us over these last few days. There are times when Shana and I have been emotionally drained, and felt comforted and lifted by your words and your service. We feel incredibly blessed to have such support.
When Shana told me that Devree was accepted by St. Jude Children’s Research Hospital and all we needed was a doctor’s referral. I just couldn’t believe it. Dr. Gajjar was vacationing in India, and just happened to see Shana’s email. He called from India to tell his admissions staff that he wanted to take Devree’s case. You would have to be in our shoes to be fully amazed at how quickly it all happened. This man is the Director of the whole Neuro-oncology program at St. Jude, and he is on his vacation. (A co-incidence?)
Dr. Edward’s is the Director of the whole Pediatric Neuro-surgery program at Stanford Medical Center. He only visits Reno once a month. Devree amazingly found out about her tumor on that day, what are the chances on that one? Then she made it through the next hurdle of actually getting an unscheduled appointment with that man. (A co-incidence?)
There are so many kind, caring people reading this blog and supporting us with your words and your prayers. Devree is on Mormon, and Lutheran prayer rolls. She is also being prayed for by all of you. Our family does believe in miracles. We are truly living one. Emotionally and spiritually we are not alone, we are being carried through this trial. Thank you so very much!!!
1/16/2009 6:15 PM
This evening at 5:30 PM Dr. Edwards came by with his team. They checked on Devree and asked if we had questions. Then we told them about St. Jude Children’s Research Hospital. Dr. Edwards was familiar with Dr. Gajjar and the hospital. He told us that it was an excellent hospital.
The faces of his staff reflected the look of being fired. We felt bad about that because we are so very grateful for Dr. Edwards and his team. They truly worked a miracle for us and we are so thankful. Shana and I deeply feel that St. Jude is the right decision for Devree.
1/16/2009 9:53 PM
WooHoo!!! Somehow Devree did it. We will be released on Saturday. When we are checking out, we will give you all an update. It amazes me how Devree can say, “I want theses tubes off.” or “I want to get out of here.” She isn’t forceful, but it just seems to come together.
We really go the run-around about how to get released. The Oncologist asked what the doctors were saying, so she wasn’t the one. The nurses were waiting to hear from the doctors. The Physical Therapist asked us what our Neurologist was saying. Finally, we got to talk to our Neurologist at the end of the day. He told us that it depended on the Physical Therapist. By this time the Physical Therapist was out of the office until Tuesday because of Martin Luther King day. At this point Devree just quietly said, “I just want to go home.”
Would you believe Devree’s Nurse started to make calls? She found all of the right people and we will be released tomorrow morning sometime. We are all so very ready to go home. Devree wants to go home most of all.
Talk to you all soon!