Ella Dale

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Diagnosed in June 2007 at only 4 1/2 months old. We noticed she wasn't acting herself and seemed to be in pain whenever she was laid down or picked up. Also suddenly the movement in her legs and arms lessened to the point of no movement. Brought her to the ER at All Children's Hospital in St.Petersburg, Florida where they admitted her immediately for further testing. We knew something was terrribly wrong when the doctors came in and they themselves were rushing around getting tests and such done as quickly as possible. A CAT scan was administered and nothing came up, X-rays and again nothing. That whole night they were unable to give her any pain meds. b/c they were waiting for a proper diagnoses. Ella was in a tremendous amount of pain. All night long, groups of drs, students, fellows, you name it would come in and see her, almost like she was a great case study. Nothing I did as a mother comforted her. The next day they administered an MRI. The MRI took about two hours and while she was getting that done, Jason and I decided to go to the cafeteria to get something to eat. The doctors immediately chased us down and said PLEASE just go back to your room ASAP. Our hearts sunk, we went to the room and waited for what seemed like an eternity. A team or doctors came in our room and told us Ella had a tumor in her spine the size of a grown mans thumb. She would need to be operated on immediately and from there they would know more about what type of tumor and if it was cancerous. I fell to the floor while Jason held it together for a short time. Those words have played over and over in my head on a daily basis from that point on. Ella went into Pediatric Intensive Care Unit (PICU) that day and was put on high doses of pain medication. We were finlly able to see her and there she was smiling, finally out of pain. That is when Jason finally broke down. It was unexplainable that our daughter had to go through this horrible pain and this was just the beginning. We went home that night, without Ella, as quickly as possible to pack our bags for what would now become our home away from home. Family was on there way down but for those first two days, the only thing we had was each other! The next day, June 12, 2007 Ella had a resection to remove the tumor from the spine. As you sign millions of consent forms with all the things that could possilby happen my heart felt like it was on the floor. The surgery took 2 hours and the doctors said she did great. She was placed back into the PICU for the next two days to recover. I was so nervous to hold my baby after surgery because her neck was so fragile. Doctors informed us that it could take a week to get the results of the biopsy and to just wait it out. We finally got our own room which was nice because we had a lot of family there to support us. Within that week, a dr. came in sullen and said it was indeed CANCER and only had 30% chance of survival!! Again, my knees cracked and I went to the window and cried. I couldn't look at my little girl at that time because I had no way of helping or saving her. I felt hopeless as a mother. As the dr. let it sink in, she went and got us all the info we needed and then came in to describe what type of tumor it was. It was a HIGH GRADE ANAPLASTIC ASTROCYTOMA. Anything in the spine and brain are considered CENTRAL NERVOUS SYSTEM or BRAIN TUMORS. We went home within two weeks after surgery just to return b/c the incision sight became infected. They told us that would be at least a two week stay b/c of the antibiotics she would need to be on. Within that time, things were scheduled to start her CHEMOTHERAPY as soon as possible. They scheduled another operation for her BROVIAC placement at the end of JUNE 2007. A BROVIAC is a permanent IV that is placed in her chest. It was necessary b/c she would receive chemo and many other drugs through that line and putting in an IV all the time was not an option. So after all those happenings in June, July 4 2007 came and Ella started Chemo. Jason had gotten really sick (wonder how that happend??) and was not allowed on the oncology floor. So Ella and I faced this thing together. She did exceptionally good and the doctors warned us that the first round doesn't hit them that hard, it is the farther in you go the harder it gets b/c it wears the bodies immune system down. In late July 2007 Ella had another MRI and it showed she had HYDROCEPHALUS. Which is too much water in the brain. So in July she had a SHUNT placed in her head that would remove the liquid from her brain and drain it into her stomach. Ella did her second round of CHEMO in August 2007, went home, only to be rushed to the hospital in an ambulance b/c she has serious infections in her BROVIAC. She recovered after two weeks, then immediately began her third round of Chemo. She receieved another MRI in September and this was when we were introduced to Dr. Stapleton. She came back with Ella's results and said she could see some changes in the tumor, not any growth but some things that alarmed her some. Ella did two more rounds of chemo, each time wearing her down more and more. She wasn't gaining weight and still weighed 14.5 lbs, what she was in June 2007. So her next MRI was scheduled in Nov. 2007 and Dr. Stapleton came in with horrible news. Even with the chemo, her tumor had begun to grow!! We all cried together, including the Dr. Options soon came our way. We could do another surgery on the spine but with a 95% chance that Ella would need to be put on a TRACH or breathing machine b/c that area cannot endure 2 surgeries or we can try this out of the box CHEMO that has some good results of working on Ella's type of tumor and the makeup of it. But, it would require STEM CELL TRANSPLANT. Which meant, they would give Ella a large dose of GCSF to make her own bone marrow over produce stem cells so they would spill out into her blood. Then once they know she has a lot, she would have surgery AGAIN to put in a huge line in her neck so they could harvest them. Jason and I said and conti. to say it is quality of life over quantity so the NEW CHEMO it was and it all began immediately. She had the surgery for the line in her neck (which was very painful) and at the same time received a feeding tube. They harvested her stem cells for 2 whole days and she came out of it like a trooper. In December 2007 she began this new CHEMO which WE administered at HOME. NO more hospital visits for chemo, but we were still anticipating going back for low immune or low blood counts. But December came and just like a Christmas miracle Ella did great. She received her own stem cells with hopes it would boost her immune system after such a toxic dose of chemo was give. IT WORKED!!! We were able to be HOME for the whole month. Ella's first Christmas was great! January 2008 came and another MRI was scheduled. After two rounds of this Chemo the MRI came back STABLE!! The dr. was thrilled and called us with the results as soon as we got home from getting the MRI. We were all so happy but with news that my GRandma Deane had passed that same day while Ella was getting the MRI. But to this day, I believe she went on with a purpose and that is to watch over Ella and make sure someone was watching over her. So we decided to move back to New York b/c being in Florida alone just wasn't working. In March 2008 we moved home and settled back into the tiny town of Jamestown. Ella continued to receive this Chemo that was working. We are now going to the University of Rochester Medical Center/ Golisano Childrens Hospital. What a great hospital. She received the rest of her chemo there and in JUNE 2008 she began RADIATION. She received radiation for a whole month, MON-FRI! We stayed at the Ronald McDonald house and enjoyed it for the most part. What a great program that is and what a help it is to many parents. I highly recommend if you want to donate anything to a charity that is the one (other than CHILDHOOOD CANCER AWARENESS!!!!). After radiation was completed Ella would be able to live life. No more hospitals, no more chemo, no more anything. She got another MRI in September 2008 and it came back stable. She then got another one in November 2008 and it came back with NO GROWTH but with some swelling around were she got her radiation. Drs. said it is "normal" to have swelling after radiation but couldn't promise us that this meant it def. wasn't coming back. So we talked to the doctor and asked if Ella could get her BROVIAC taken out. He kind of hesitated b/c of the swelling and wanted to def. make sure that this tumor was stable. So I asked the hard questions. What are our options ifffff it does?? He kind of said there really aren't that many and one being CHEMO which would prolong her life by months if we are lucky. AGAIN, quality over quantity came into play!!! I have seen what chemo does to her and that was NOT an option just so Jason and I could have her selfishly for a couple more months while she suffered???!!! NO I said without hesitation. She will not be put through that again. She is too happy and feeling great. So with that decision made within minutes, the DR. agreed that taking out her BROVIAC would make sense. It would allow her to live normally without anything medical attached to her!!! So she got it out and is doing wonderful. She loves her big girl baths and playing naked! We are now just awaiting her next MRI, on January 20, 2009 her second birthday to see what is going on. We PRAY PRAY PRAY for it to come back STABLE!!!! Ella is doing great and is learning new things all the time. She receives physcica therapy, occupational therapy, and speech therapy all twice a week and is loving it. Her therapists are wonderful and I give them a lot of credit for getting Ella to where she is at now!!! She is still unable to walk or put weight on her legs but is able to crawl to the best of her abilities! She gets everywhere and anywhere, kids with disablities know how to conquer them and work through them. She still doesn't talk but her Speech therapist is working very hard with her. All we can do now is to live normally and continue to give her what she needs. She is our world and will always be!!!! She is our angel!!!