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!
Praying for you and your family Kayla. God has shown you some of your strengths so far, but he is not done yet. Have faith and believe ~~ (((HUGS)))
As a BC survivor I feel the pain for Kayla and her family, treatments are heartwrenching, stressful and exhuasting. I saw Kayla’s pic of Taylor Swift and read her story, I will pray for remission and improved quality of life which I hope will be many more years to come! Jena
https://www.facebook.com/photo.php?fbid=451554341560626&set=a.324087260974002.71198.324082180974510&type=1&theater
Prayers continue for Kayla and her family! Keep the Faith! Know that you are loved by so many people Kayla! BE STRONG! BE BRAVE! BELIEVE! Love you, Ms Connie
So so sad…I will continue to pray that your family and Kayla receive God’s grace and a cure. God Bless You All!
Sending love & prayers to all
Holy Family Regional School in Rochester, Michigan, will pray for Kalya during morning prayer. School starts back tomorrow! Over 1000 prayers coming her way!
thank you so so much1 love, Kaylas mom Naomi
Kayla , you are in my Prayers and also your family !!!! We all need to think positive and believe you are already healed , and believe that with all of your Heart and Soul !!!! What we think about we bring about !!! With all My love and Prayers to you and your family !!! I would like you to go to abcliveit.com and please watch this dateline Report , I do not usually read these kind of emails but I was drawn to yours for some reason???? Nothing in this world happens by mistake !!!! absolutely nothing !!!!
Have a Blessed Day
Michelle Zapinski
m.zapinski@yahoo.com
586-222-5418
Have you checked into the mayo clinic? I have heard several success story’s come from there! Keeping Kayla in my thoughts!
Sweet Kayla, you and your family will be in our thoughts and prayers daily. Hang on to your amazing strength and courage.
Hi Kayla, I just finished reading your dad’s account of your journey so far. What a brave girl you are and what a dedicated family you have! Also you have a God who loves you and is watching overyou every step of the way. My prayers are with you and your family daily and I want you to know how very proud I am of you that your story is “out there” for the world to see and that you have such a testimony to share. I was soooo proud of you when you were interviewed by Chanel 2 news and that you gave God the credit for your journey. He will never fail you.
I love you and you have my full support in every way. God bless you and all your family and friends who are so lovingly supporting you. Greatgrandma, Margie
I will keep Kayla in my prayers. I myself am still in remission from Having Ovarian Cancer back in 1998. I am a high risk for breast cancer. Sad to hear this it made me cry. My heart goes out for you Kayla. I live in Michigan i’m very close to you. You can contact me when ever you like at my e-mail i would very much love that.ANGELS BE WITH YOU ALWAY’S KAYLA Sincerely Connie
You’re in my thoughts and prayers! I’m sure there are many others praying for you as well.
We read your story and we pray for you and your family to be strong and hopeful. Everyday that we live is a chance for a medical breakthrough. It does happen. You have a brave and strong spirit that will see you through everything. If there is power in
prayer, you have it from everyone who has read your struggle and are feeling what you need in their hearts and is echoed in their daily prayers for you. God Bless You and Your Family. Great Grandparents Joel & Carol
What a courageous story. My prayers go out to you Kayla and your family for peace and understanding by the doctors and all involved. May you come out peacefully on the other side of this trial. Remember the trials of Job for encouragement. My granddaughter’s name is Mickeilah – we call her Kayla for short. May Jehovah God’s wisdom and peace and loving kindness be with you all.
I read your story and wish I had your strength… What a brave girl you are and so beautiful. Keep your faith strong and God will take care of you. Say out loud With his stripes I will be healed and really believe it. Love and prayers are sent your way.
God bless and shower you HIS miraculous healing power. Have Faith and with
Everyone’s prayers and God’s help, you will survive this . You are a fighter and
you deserve to have a healthy and normal life.
Praying for you Kayla! I have been told I am terminal and still keep fighting. With family and friend support, stay POSITIVE and never lose HOPE! This along with prayer is the best medicine! Hugs to you and you will remain in my prayers!
We will keep you in our prayers Kayla. You are so brave. I had my first brain surgery for a milignant tumor on August 16, 2002. Had three surgeries in all with all the radiation and chemo they could give. Still going
I am praying for you .god well bless you i pray i have a gril she is 20 year,s old .
Kayla, I have been through it too. NOT fun. The doctors had given up on me, so I contacted the 57healers site on FaceBook. The docs gave up, the healers healed me. I am now more or less normal, which is a wonderful feeling.PLEASE contact healerali@comcast.net. She will help you enter the group. They are all effective and pleasant. I have no idea how you feel about healers, but please don’t turn them down. They healed me when others couldnt. hopefully and lovingly, zeneagle
Kayla, Our hearts, thoughts and prayers are with you. My 16 year old son is a cancer survivor….he knows all too well the treatments you are going through. Stay strong! Keep fighting the fight – Zak style!
I too have a teenage daughter. She just turned 15 this month. I cannot even begin to imagine all that you and your daughter and family is going through. My deepest condolences and thoughts and prayers go out to you all. I pray that she will rid all of the cancer and start feeling better and healing soon. I pray that it NEVER comes back as well. Please send my love to Kayla and let her know her story really touched my heart.
I saw your webpage on Usmagazine.com. I am so glad Kayla met her idol. Kayla sounds like an amazing young woman. I am very moved by her story. My sister-in-law battled a very rare brain cancer and is now cancer free. So please have hope. She learned about doctors and a center in North Carolina where people’s lives have been saved. Please look into that. It sounds as if you are doing everything you possibly can, so keep going, and know you are in my prayers.
My husband was diagnosed with GMB Stage 4 at the age of 34 on 4/20/09. He fought hard and never gave up. His headaches stopped on 7/14/11 and my heart was forever broken. Brain Cancer Sucks!! Stay positive, attitude is everything! I will pray that the medicines do their job. I donate towards many brain tumor funds, looking for a possible cure. Avastin worked for us to a point and there were many side effects but hang on there.
My mom has same cancer, gbm, she is currently on avastin and isn’t getting better. Any words of advice?
I’m so sorry for you. I have a friend that has cancer. It is a terrible disease. I live half way across the country in Utah, but I still feel your pain. HAVE HOPE KAYLA.
YOU CAN BEAT THIS!!
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
13 Then young women will dance and be glad, young men and old as well. I will turn their mourning into gladness. Iwill give them comfort and joy instead of sorrow.
(Jeremiah)
Prayed for clear scans and sustained hope.
Hi Kayla! Read your story on yahoo about meeting Taylor Swift! Awesome! I have heard she is really down to earth. I live in Nashville, so glad you got to come visit our fair city! You are an “enchanting”, lovely young lady, and I wish you the very best with your treatments. I hope the side effects don’t wear you out. Hang in there!
Love from Nashville!
Brandy Rivers
Please stay strong, Im so happy you got to meet Taylor. Im sure that was a wonderful time. My sons father is also ill. Maybe I shall add Ruta 6 & Calcium Phosphate to his diet (: God bless you
We’re rooting for you Kayla and praying for complete healing.
If you want to make your voice heard to give childhood cancers more attention, considering signing this petition to light the White House gold in September in honor of pediatric cancers.
https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX
This petition was started by Maya Thompson, whose son was the subject of Taylor Swift’s song “Ronan” and whose mission is to give childhood cancer the attention it deserves.
As my daughter just turned 16 yesterday, I can’t imagine going through what you and your family are having to endure. You are most definitly a very strong girl and I am hoping that and believe that you will win this battle. Prayers your way always and forever.
May God bless you with his healing hands. You are such a beautiful young lady. I am happy you had the opportunity to meet Taylor Swift. I am praying that God will give you and your family strength to continue to fight this cancer. Stay positive in knowing that God does love you and will remain at your side. When you feel you just can’t go on, turn your head to the side and know Jesus is standing there beside you waiting to take your hand and walk with you through this journey. Keep ahold of his hand,feel his love and follow where he leads you.
Kayla, Hang in there. I am an 8 year survivor of a Grade 3 Anaplastic Astrocytoma. You can do it!!!!!!!! I was only 5 when I had my tumor and I took the temodar, decadron, and all the other stuff that goes along with the chemo and radiation. I will say a special prayer for you and your family!
Dear Kaya, I think the number one thing after faith is an uplifted spirit. You know what I’m saying love of family, visits from people you look up to or admire, fan mail that inspires you as you inspire us. Most of all contiunuing to live your life as best you can. May you enjoy dances, Shopping trips with special people, hugs and kisses and even the thrill of helping someone else do something you are good at. I wish I could say something that could keep you cresting up high for a day or even an hour but I don’t know how. So I will leave that up to you and those who know you best, I truely believe that your body works to heal itself the most when you are high on life itself. Thanks for reminding me of that. I am fighting my own demons. I have Sjogren’s which is causing me to live in constant pain now and on morphine.While I cross my fingers waiting for a cure I will smile and laugh more. Love my family and live life to the fullest. Don’t let it define you Kayla. You are you, Kayla not your disease. It sounds like you are doing a pretty good job of it. Just wanted to post a reminder. God bless and keep your spirits high.
Stay strong, you can beat this, you are turely remarkable. I will pray for you and keep you in thought!!! Christy