Kayla’s story started in May 2011, when she was at school and felt a sharp pain in her head followed by a headache and numbness on her left side. We picked her up from school and took her to the doctor. They performed all the standard neurological tests and couldn’t find anything wrong, and we were told to take her home and rest. We took her home and when the numbness didn’t subside, we decided to take her to emergency at Beaumont RO. They performed all the standard neurological tests, and couldn’t find anything wrong but wanted to send her for a CT scan as a precaution before sending us home. The scan showed that Kayla had a stroke/bleed in the brain and she was admitted for more tests and monitoring. For the next week she had multiple CT scans to make sure there was no further bleeding, and we were able to take her home. They believed she had a weak area in a low flow blood vessel that burst. They told us it was something she could have been born with that just gave way, but we needed to wait until the blood was absorbed by the brain so we could get a clear picture of what happened. After 7 weeks she had an MRI, and a white area was visible where the blood once was. Because there was no change in size of the affected area, they felt confident in their original diagnosis. They attributed the white area to scar tissue caused by the bleed. Kayla was given a clean bill of health and were told to return in a year for follow up evaluation and MRI.
Kayla started experiencing headaches and vomiting in late November. After seeing her pediatrician and calling neurologist, we were told she was probably having A typical migraines and should take her to see a specialist who deals with headaches. When her symptoms progressively got worse we took her to emergency, where they did a CT scan and found a mass about the size of a golf ball located in the thalamus. Kayla was admitted to pediatric ICU at Beaumont Hospital on 12/22/11, her 16th birthday. Surgery/biopsy was scheduled for the next day 12/23/11 at 11:30am and took about 4 hours. The surgery was performed by Dr. Piper and everything went as planned. He was able to safely remove about 30-40% of the tumor, anymore would have been extremely risky and could have left her with a deficit. She spent the next week at the hospital recovering from surgery. She had trouble with motor skills and strength, especially on her left side. They sent the biopsy to multiple pathology institutes around the country for evaluation, and we finally got her results on 01/02/12. She was diagnosed with a GBM grade 4 brain tumor. Because of the seriousness of the diagnoses, we were scheduled to start an oral chemotherapy (Temodar) and radiation on the following week. Although she was still recovering from surgery and unable to walk on her own, she was released from the hospital on 01/03/12. We got a wheel chair, walker and shower chair sent to the house to help her until she regained mobility. Kayla started radiation on 01/17/12 and chemotherapy on 01/19/12. On her first radiology appointment, they requested that we have an MRI of the spine done. Because the tumor is so close to the spinal cord, they wanted to make sure nothing got into her spinal fluid and traveled to her spine. When they did the surgery, they tested the spinal fluid, and it was negative, but the radiologist wanted to be safe and have an MRI. She had the MRI on 01/11/12, and took 1 1/2 hours to complete, because it started from the head down to mid back. We got the results next day, and it was negative. They did however adjust the radiation field, based on the MRI, because the tumor was sitting lower than they originally thought. This treatment is scheduled to continue until 02/20/12, and then she would take a 4 to 6 week break and get an MRI to see result of treatment and determine our next steps. I sent her records to St. Jude and U of M for a second opinion and to make sure they agreed with our current course of treatment. Everyone agreed that this was the standard course of treatment to start with before looking at other options. She started working with physical therapy and continued to get stronger each day.
About 5 weeks into her radiation, she started having some of the same symptoms as before. We took her back to Beaumont, where they did an emergency CT scan, and discovered there was swelling and spinal fluid was backing up again. They admitted her for an MRI and observation, until they got her symptoms under control. They presented her case before the tumor board, and they all agreed that despite treatment her tumor was growing back. The entire tumor that was removed during surgery had already grown back. They felt it was true progression of the tumor and not pseudo progression (where the tumor can appear to be growing but is actually swelling caused by radiation). We needed to find another treatment option and get her started ASAP. Her oncologist wanted to start her on a drug called Avastin. That attacks the tumors blood structure and cuts off its blood supply, starving and killing it. I started getting second opinions and looking into alternative treatments. I contacted St. Jude, U of M, John Hopkins University and made arrangements to have her seen by doctors at the Burzynski clinic in Texas. Her doctor contacted colleagues at Duke University, St. Jude and U of M, to verify that Avastin was the best treatment to start her on, along with the Temodar. After consulting his colleagues, he wanted to finish out her radiation treatment and start her on Avasin the following week along with Temodar. The Burzynski clinic was the only place offering an alternative treatment, but we couldn’t get an appointment to see him until the end of March. Not wanting to delay treatment we decided to start her on Avastin. After 5 weeks, she had another MRI that showed the tumor was shrinking. This was great news, but we decided to follow through with our appointment at the Burzynski clinic. They were offering a new clinical trial using antineoplasin therapy. After evaluating Kayla and her treatment, they felt we should continue with Avastin because it was effective. They suggested some additional treatments along with Avastin, and told us to return if the Avastin stopped working. We continued with Her Avastin (once every other week by IV) and Temodar (once a month for five days). I also added a holistic treatment used in India called Ruta 6 & Calcium Phosphate.
Unfortunately by this point Kayla had lost the majority of her hair from radiation treatment and also affected her eye sight. The steroids (Decodron) she had taken to keep the swelling down, had caused terrible stretch marks to 75% of her body. The Decodron breaks down the elasticity of the skin and causes water retention, increased appetite and leads to weight gain. After the surgery we noticed her voice had become shaky and was worse while taking the Decodron. She also had a picc line put in to help with blood draw and treatments, because her veins were becoming very difficult to insert IV into.
Her treatment turned out to be very effective against the tumor, and she had three more MRI’s over the next four months that showed significant shrinkage and two more that were considered stable (no change). The tumor had gone from the size of a golf ball down to the size of a small gum ball over eight months of treatment. The area that was left had become much less dense and appeared more clear. We couldn’t be sure if the remaining area was actual tumor tissue or scar tissue. Doctors were very pleased with Kayla’s results and how well she was tolerating treatment. We we’re winning!
On Dec. 19 Kayla was having problems with her left leg and made walking difficult for her. We took her to Beaumont and found she also had very high blood pressure. Her doctor was concerned and sent us to ER for an MRI, and it showed a new tumor located in her frontal right lobe (3.5cm X 1.5cm). She was admitted, and doctors started working on a new treatment plan. After spending Kayla’s birthday, Christmas and New Years in the hospital last year, she was determined not to spend it there this year. They got her blood pressure under control and let us take her home on the 21st. We went back to see her doctor on the 26th, to find out more about a treatment plan, but he wanted us to get a more advanced MRI, with perfusion before starting treatment. There is a small possibility that this new area could be necrosis/damage from the radiation treatment, because damage from radiation can occur up to twelve months after treatment. The Avastin, should have prevented this from happening but needs to be ruled out before making any treatment plans. Her doctor believes we are dealing with a mutant form of her original tumor that’s immune to current treatment. We will know more on Jan. 2nd, about her latest MRI and future treatment. I contacted the Burzynski clinic again, but unfortunately they are no longer taking pediatric patients. Most clinical trials require you be 18 years old to participate. I will update as we have more information. Thanks for visiting this site, and please keep Kayla in your prayers!