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For those who know Jillian, you know about the difficulties she has had to endure.  Jillian's story of all she has endured and continues to endure has been amazing.  She always has a smile on her face and she is willing to go out of her way despite the pain and fatigue she feels to make others happy.

In October 2002 Jillian was in Utah with her mother attending a relative's funeral when she became very ill and collapsed. She was transported to Primary Children's Medical Center in Salt Lake City, Utah.  We spent the day and most of the evening waiting in the ER for the results of numerous tests.  The medical staff was desperate to find a diagnosis that would explain her sudden onset of symptoms. But none of the tests enabled them to determine a diagnosis.  Finally the doctor explained that they needed to run one last test. 

It was late in the evening when the ER physician entered the room and stated that Jillian needed to be admitted to the hospital because they now had a diagnosis.  The doctor explained that their worst fears were confirmed and that Jillian had a brain tumor. He said the tumor extended into her spine and that it was blocking the normal flow of spinal fluid.  So the fluid was building up on her brain and causing swelling. There were no guarantees that they could fix this.  But the first step was to call in the specialists to see if they could control the swelling and decrease the pressure on the brain.  After a few days of treatment in the hospital the swelling started to decrease.

We then had a surgical consult with Dr. John Kestle, Pediatric Neurologist. Dr. Kestle explained that he was willing to perform surgery to remove the tumor, but that he may be able to remove only part of it.  He said removal of 50% was likely and perhaps 60% to 70% if we were lucky. He went on to explain that the tumor was at the base of the brain and extended into the gray matter and the spinal cord. He said this is the part of the brain that controls all bodily functions, such as the heart and kidneys, even swallowing. He said that if Jillian had the surgery, she might lose some of her bodily functions such as swallowing, breathing on her own.  He said she could even be paralyzed for the rest of her life. There was no way to predict the complications that may arise. However, the surgery was our only hope to save Jillian's life. Jillian went into Surgery on October 9, 2002 only 11 days shy of her second birthday.

After many long hours in the surgery waiting area, the surgeon finally came into the room with tears running down his face. He stated that Jillian was well and that he was able to remove 95% of the tumor. He said that we would be able to see her momentarily.  He was then called back into surgery where there was an emergency that needed his assistance.  After waiting some more, we asked the nurse how much longer it would be before we could see Jillian.  After she went in to check on the situation, Dr. Kestle returned and said we would be able to see her once she was stable. He said that there was a complication that came up immediately following the surgery. The problem was that Jillian's body temperature was rising at a rapid rate and they had to get her cooled down. The doctor concluded that Jillian was having an allergic reaction resulting in hypothermia caused by the sedative used for the surgery.

The surgery left Jillian paralyzed.  She also developed meningitis twice in the next 30 days.  During the six months after surgery, Jillian had extensive physical therapy and occupational therapy to help her regain her strength so she could walk again.  It was also determined that she had a significant hearing loss and that she would need hearing aids.  Despite the hardship she had to face, Jillian recovered with minimal disabilities and came back home a happy little girl.  She continued her post surgical care and further treatment with Dr. Nalen Gupta, a neurosurgeon at University California San Francisco Medical Center.

In March 2006 Jillian's brain tumor reappeared and she was faced with having surgery for removal of the tumor again.  She also faced the same possible side affects once again. This surgery would require a different sedating medication to avoid a possible malignant hypothermia reaction again. The surgery went well, but it also resulted in partial paralysis. We were confident that with physical therapy she would regain the functionality that had been lost just like the first surgery.

Dr.Gupta explained that there was a lot of scar tissue and that every surgery imposed a greater risk to spinal cord injury, injury to the brain, and more scar tissue. Consequently, he recommended that Jillian receive chemotherapy to prevent the tumor from growing back.  We discussed this treatment with UCSF Pediatric Oncologist Dr. Anew Banergee.  We had several concerns about putting Jillian on chemotherapy.  First were the side affects.  Second was that Jillian also had a hereditary neurological condition, Charcot-Marie-Tooth disease (CMT) see www.cmtausa.org.  The chemotherapy drug Vincristine is normally used to treat Jillian's type of brain tumor.  The problem is that this drug is contraindicated in patients who have CMT. Vincristine and other chemotherapy drugs can exacerbate the symptoms of CMT, cause permanent paralysis in patients with CMT and may even result in death.

  

After reviewing Jillian's history and discussing the potential complications with Dr. Banergee we agreed to start chemotherapy with the drug Temodar.  Kytril was also prescribed to help with nausea.  Except for the nausea and her lack of appetite, Jillian seemed to tolerate these medications for about six months. Then after careful review we decided to discontinue the treatments due to her drastic weight loss.

Jillian has had MRI's every six months to determine the status of the tumor.  Her last MRI and a follow up appointment with Dr. Banergee was April 2012.  At this appointment, we were informed that the tumor was growing and that it needed to be followed more closely.  On July 23, 2012, accompanied by her mother and her grandmother, Jillian flew to Houston,Texas for a consultation with  the Burzynski Clinic (www.burzynskiclinic.com).  Dr. Burzynski is confident that he can successfully reduce Jillian's brain tumor with his Antineoplaston therapy. This treatment is a targeted gene therapy that does not harm healthy cells or other body tissues, like chemo does.  After researching the treatments available at the Burzynski clinic we feel that this is the safest treatment for Jillian.  And we believe that after this treatment she may never have to experience the pain and suffering of another reoccurrence of the brain tumor again.

However the Burzynski treatment is costly and our family is financially strapped with the ongoing care for Jillian. The cost of the treatment is $17,500 initially and $7600 per month for six to twelve months afterwards. Our family is asking for support and help towards Jillian's treatment from our friends, family and community.  Our goal is to raise at least half of the treatment expenses.  We also need help with transportation and housing for 30 days in Houston for the initial therapy.  Airline miles and hotel points would also help, but anything you can contribute is needed and appreciated. 

Please send contributions to:

Jillian's Hope Fund- A Special Needs Trust

c/o Chase Bank

1305 Stratford Avenue

Dixon, California 95620

Make direct deposits to account number 437502649 routing number 322271627

Or contribute through the trustee’s PayPal account: sherryakelley@gmail.com

Or contribute via her fund site https://www.wepay.com/jillians-hope-fund_1