Kyla Freitag

Dear Friends,

It is with great sadness and heavy hearts that we must let you know that our sweet Kyla died on June 14th, 1999. In April we noticed her stumbling again, and an MRI of her brain showed tumor growth. We immediately increased her dose of medications in the hopes of stopping the tumor again.

In June she seemed worse and another MRI showed slight growth and mild hydrocephalus. We took her into the emergency room on Sunday evening , June 13th, because she seemed worse, we assumed from the hydrocephalus. Soon after we arrived at the ER Kyla said quietly "Come on, lets go" and giggled. She was not speaking to anyone but rather seemed to be talking to something we couldn't see. After she spoke those words she started to yawn every few seconds and was becoming less aware of things around her.

We called the doctors into the room and I (Juliet) kept telling Kyla how much I loved her. She slightly nodded when I asked her if she knew how much I loved her. She was rushed to get a CT scan,  which sadly showed bleeding into the tumor. The doctors explained that with the type of tumor Kyla had this was not uncommon when there has been some growth. At this point Kyla was in a coma. They told us Kyla was not in any pain but that she would not wake back
up. We were told she probably would not make it until morning.

Around 7:35 am on Monday June 14th Kyla took her last breaths. We said our good-byes and kissed her then wheeled her empty stroller out of the hospital. The staff gave us a lock of her hair, her footprints and a plaster cast of her hand.

Kyla was buried in Nebraska where Buck was raised and where we shall move. The ceremony was very special as we blew bubbles over her casket as it was lowered into the ground. She was dressed in her princess outfit, crown , dance shoes, and some of her favorite toys were  placed in
beside her.

Our hearts are broken to say the least. Returning home was so hard, and we see Kyla everywhere we turn. She gave us so much in her four and more years with us. She taught us about courage, hope, happiness, among others things. We are lost without her, but will go on and try to make a difference in this world to honor her. We will never stop telling people about her, and she will always be our daughter, our Kyla.

We will be moving back to Nebraska it seems. It was very hard to leave her grave there but we knew we would return. Life has been hard. It is time to step back to a slower pace of life and try to find some comfort. Plus Savannah and Braelyn need to be in a  place where they can play without cars whizzing by. It's time to rest.

Please do not be afraid to speak to us or about Kyla. Things may be uncomfortable for awhile but we will all find a way. 

                                 In Loving Memory of:

                                  Kyla Louise Freitag
                        November 1, 1994--June 14, 1999
                            "Our brave little dancer"
Sincerely,

Buck, Juliet, Savannah, "Angel" Kyla, and Braelyn Freitag

P.S. Thank you, Dr. Burzynski, for the time you gave us with Kyla. We are forever grateful. Because you cared, Kyla danced....

In September of 1996 our world came crashing down when our 22-month-old daughter Kyla was diagnosed with an inoperable brain stem tumor called a pontine glioma. After months of misdiagnosis the doctors finally found an egg-sized tumor in Kyla’s brain that was causing her to have trouble walking, swallowing, and causing her left eye to turn inward. At that point, we were told that the tumor was incurable and nothing would save our little girl.

Refusing to give up hope, we took her to the highly recommended brain tumor team at Duke Children’s Hospital. Unfortunately, they also told us that Kyla’s tumor was incurable. However, they recommended a protocol of high-dose chemotherapy in the hope it would extend her life.

We agreed to this treatment, and we prayed for a miracle. Within 5 months, however, Kyla’s body could not take any more chemotherapy. Her immune system was not rebounding, and her kidneys had begun to flush out essential minerals. Kyla spent most of that time lying listlessly on the couch, sitting up only to throw up four to six times a day. Even though she was alive, she was not living.

At this time, we discussed our options with the doctors at Duke. Because of Kyla’s young age, they could not recommend radiation. All they had left to offer was low-dose chemotherapy. Because Kyla was already on high-dose chemotherapy with no tumor shrinkage, we decided to give her body a break and try something else. The doctors at Duke supported our decisions and agreed that Kyla had had enough.

We had heard of Dr. Burzynski through the father of one of his patients, a little boy named Eric Zielinski who is close to Kyla’s age and also has a brain tumor. Eric’s dad Tim and I had spoken frequently about Dr. Burzynski’s treatment, as well as our kids and their fight against cancer. Tim told me about how Eric had also been through chemotherapy until he couldn’t take anymore and how they had taken him to Dr. Burzynski. It sounded as if he could have been talking about Kyla. Finally, I called the Burzynski Clinic. Kyla's father and I then decided that her life was worth taking a chance on this treatment.

In March of 1997, after being told Kyla only had 2 months to live, we  headed to Texas. At the time, Dr. Burzynski was in court with the FDA, and we didn’t even know if their would be a treatment by the time we arrived in Texas. It was in a restaurant in Georgia that we heard Dr. Burzynski would be able to continue to treat patients. We were relieved and continued on to Houston.

Kyla started Dr. Burzynski’s therapy on March 7, 1997, after getting FDA approval to be on the treatment. We now celebrate March 7th as Kyla’s other birthday, because it is the day she was given back her life. Only a parent who has been told their child has no hope of survival knows what it feels like to be handed that hope back. From day one on antineoplaston therapy, Kyla had no serious side effects, and certainly none  like she had on chemotherapy. On it, she stopped walking, talking, and even moving; to see her smile was rare. On Dr. Burzynski’s treatment the only side effects we have seen are increased thirst, an occasional rash, and increased urine output. Every side effect is taken seriously by the Clinic, and Kyla's dosage is adjusted accordingly.

I am happy to say that Kyla is talking again, has a head full of golden curls, smiles every day, and recently has begun to crawl again. Today, May 26, 1998, she even stood on her own two feet without support! I cannot express what it is like to see life come back into her body. I can say what it was like to see her suffer so much from the chemotherapy she was on before. It ripped my heart out, and to this day I feel guilty for agreeing to put her through that. I cannot change that, but I can keep her on Dr. Burzynski’s treatment, which has never harmed her and has given her a life worth living.

We feel we have made the best choice for Kyla. She has far outlived the time frame we were given when we left Duke in February of 1997. On antineoplastons, MRIs of her tumor have shown that it has remained stable, a miracle in itself. A PET scan in November of 1997 showed decreased metabolic activity of the tumor.

To some this might just sound like a testimonial, but I say it like I see it. My daughter was not supposed to be alive today, but she is. There is no disputing that. I am grateful there was another option for Kyla. I am grateful that Dr. Burzynski stuck to his guns and was able to offer this treatment to my daughter. I am grateful that every day Kyla smiles at me.

Juliet Freitag