Ashley Elizabeth Montgomery
On June 4, 2001, at the age of 9, My Daughter Ashley was diagnosed with cancer, Ependymoma. A brain tumor. After surgery at a Chicago Children’s hospital, Ashley went to St. Jude Children’s Research Hospital for 2 months, where she underwent radiation treatment. From this diagnosis, we learned something amazing about Ashley. She was the bravest most positive person we had ever known. At 9 years old, she was braver than any adult and had an attitude that you don’t even see in adults. She was wise beyond her years. We also learned that Ashley had a Heart of Gold, as her compassion and concern toward other children fighting this monster, was so powerful that it radiated from her. You could feel it. When she was first diagnosed she was given a special green scapula that was known to cure cancer if you kept it by you, by your bedside. Ashley always had it hanging by her bed. A day before we were getting ready to head home from Memphis, we learned a little boy we knew was going into emergency surgery & that his chances of making it through surgery was only 10%. Ashley heard this & she said to me, “Mom, we need to go to the Ronald McDonald House & get my Green Scapula & bring it back for Daniel. Daniel needs it more than me.” And so, we did.
Ashley had done well with radiation. Better than her doctor had expected. She did have side effects. Some that caused her to miss a lot of school. But she pushed through and did well in school. For the next 7 years she would go back & forth to St. Jude for follow up visits. Her doctor was convinced she was cured. Then at her 7-year checkup at age 16, they discovered the cancer was back, but this time the tumors were along the spine. Her doctor & many other doctors were shocked. Generally, if it comes back, it comes back within a year or two & in the same spot. He said they were flabbergasted.
Ashley was 16, almost 17, so we decided that she was old enough to make her own decisions. She was wise beyond her years & this was her body, so we agreed that she would have the final say in any & all treatment & procedures.
Ashley had surgery again at the same Chicago Hospital. The only thing at the time known to cure Ashley’s cancer was radiation. Her doctor at St. Jude wanted to do the radiation as soon as possible. Her doctor in Chicago wanted her to try a drug that they had been using to prolong life in adults with brain tumors. They had used it on adults for a year. He asked her to take it for two years. He went over the potential side effects, but conveniently left out the most important side effect. I found this out after I researched the drug. That side effect was that it could cause a secondary cancer. I questioned Ashley’s Nurse Practitioner about this side effect. She said that I shouldn’t worry, that the chances of her getting this secondary cancer was low. I was still worried, and I brought it to Ashley’s attention. I told Ashley about this side effect & then told her that she didn’t need to take this drug. I told her that she could just do the radiation & be done. That it worked before & it will work again. She said, “But isn’t this how we find cures? I am willing to take that chance, if it means that it can help prevent other children from going through what I have gone through.” Against my advice, Ashley took the drug, because she wanted to help children. When I discovered she was allergic to it, they insisted she continued with it & take Benydral with it. Ashley then went through her radiation as well. They didn’t think Ashley’s chances of surviving radiation were good, but she survived. Her attitude & strength pushed her through. During this diagnosis, is when I came up with the idea to start the foundation.
Ashley’s constant perseverance & concern for other children, made me want to follow her lead & so I started the Foundation.
At her check up at St. Jude, in November 2010, they found a growth in her head between the skull & the Dura. Ashley just finished that drug that Chicago was administering. In January of 2011, she had surgery in Chicago to remove the growth. It was benign. A month later she would suffer an infection from that surgery that required another hospitalization & surgery. She then needed to take IV antibiotics for 4 months & then oral for 2 months after.
Ashley started to show many side effects from her treatment. She would have permanent hair loss, osteoporosis, nerve damage causing her to limp, vision issues, she went through menopause at 21 years old & she had short-term memory issues. Yet she pushed through all of this. She graduated High School with honors, went on to earn her 2-year degree at the local community college and then transferred to Olivet Nazarene University. Ashley originally wanted to be a doctor, but due to everything she had been through, school kept getting delayed. She then decided it made more sense to become a Nurse Practitioner with a specialty in Pediatric Oncology.
Ashley graduated from the community college in May 2014. Then in August 2014, she started her first semester at Olivet Nazarene University. She had to forgo going away to college because of her health. Besides, ONU had a great nursing program. Then in November, Ashley told me that she thought her hemoglobin was low because she felt tired & could not walk very far before she become winded. We thought it was her thyroid. She said, “No, it is my hemoglobin, something is not right.” Lab tests confirmed that Ashley was right & they, along with a bone marrow biopsy confirmed that she had leukemia. But not the most common form of leukemia. She had AML. A form of AML caused by treatment. In other words, the secondary cancer caused by that drug she took so she could help other children.
Ashley had the most amazing & positive attitude I had ever seen. From the very beginning, with her first diagnosis, because of her attitude, we made it clear to all that were involved in her treatment that they must always present with a positive attitude. Ashley would say, “I know the seriousness of my cancer. I however chose to stay positive because I know I can beat this.” So, we made anyone that encountered Ashley, aware that this is how she felt. That she did not want her cancer to define her & that she wanted to be treated & go about life as if things were perfectly normal.
Ashley’s chances of beating this cancer were so low that doctors would not even tell us the percentage. They were confident that she would not beat this but followed our rules and always presented with a positive attitude. Ashley went through hell. She was in the hospital for 4 months; her brother Jake was her stem cell donor. She received them in January 2015 & went home in March of 2015. The doctors were shocked. They couldn’t believe that she was 100% free of her cancer. She was getting stronger every day.
Ashley would go back & forth to Chicago every few weeks. She was doing so well. Then in August of 2016, the dog’s & cat were fighting & Ashley got in the middle. She ended up getting scratched bad. She needed stitches & they wanted to give her a tetanus shot. Something inside me said no & I argued that she didn’t need it. Chicago insisted that she did & she got it. A week later, when they ran labs, Ashley’s cancer was back. In a matter of a couple weeks, she went from being 100% Jake’s cells & cancer free, to her bone marrow being 95% full of cancer.
Ashley would start this fight with a new doctor. She was informed of our positivity rule. Yet as we would continue through her treatment, this doctor did nothing but bring a negative attitude with her & so did her team. Then we dealt with so much inadequate care. The docs told us they searched & spoke to every doctor they could think of looking for treatment. Treatment after treatment was not working. Ashley was in & out of the hospital for 8 months. She was in the hospital more than she was out. We were tired of the incompetent care & the negative attitude, so I searched for the best AML Doctor. In a simple google search, I found the best immediately. Yet her Chicago doctor never mentioned this doctor or the fact that his bio said that standard treatments did not work on patients with the type of cancer Ashley had. We decided to take Ashley to this Doctor in Seattle. We needed to carefully plan the trip there. Ashley couldn’t fly & she needed blood & platelets frequently. So, it needed to be planned to make stops at hospitals along the way. In March of 2017, while Ashley was in the hospital in Chicago, her doctor sat on the side of the bed & said to Ashley, “You know there is no cure for you Ashley. You do not qualify for any other treatment unless you get stronger.” She wanted to bring Ashley down. She couldn’t stand Ashley’s positive attitude. The Doctor I spoke to in Seattle, had a different outlook on things. He said, “As long as Ashley is Alive & Willing, there is a chance.” He also said, “If you wait for treatment, until she gets stronger, she won’t make it. She will not get stronger until the AML is out of her body.”
There is so much that I can tell of what happens next, but it would take pages. At the beginning of April, as we were preparing to take Ashley to Seattle, she collapsed at our home. She was airlifted to the Chicago Hospital to the ICU. For reasons caused by inadequate care, Ashley had fluid in her lungs & her CO2 was high. The on-call doctor for that week, was not usually there in the ICU, but he worked diligently to ensure she did not get intubated & get her stable so that we could get her to Seattle. She was improving. Then he was off call. In the next week, due to inadequate care, Ashley would be intubated, end up with an infection & on April 21, 2017 at 3pm, Ashley left this World.
Our world has been forever changed. If you knew Ashley, you would know how beyond extremely difficult this has been for me & my family.
Since Ashley’s 2nd diagnosis & the beginning of the foundation, no matter what pain she was going through, she worked with everything she had, to make this foundation a success. On top of that, she volunteered & spoke at many St. Jude events. When she spoke, she always down played what she had been through. She would say, “I am good, it could be worse & for someone else it is.” She made this cause her life. She worked up until the day she collapsed.
It has been difficult to keep this foundation going, without Ashley here with us. But no matter how hard it has been, nothing compares to what Ashley went through. So, we continue. We continue because that is what she would want. Because this is what she gave her life for. Yes, gave her life. Ashley’s 1st type of cancer with her 2nd diagnosis never came back. So, the radiation worked the 2nd time as well. Had she only done the radiation & not agreed to take that drug to help other children, she would still be here today. Ashley wanted to live so badly. She never asked anyone for anything in her short life. Never complained. They only thing she wanted was “TO LIVE.” She would have too, but one doctor & her team, made it their goal to play God & destroy her Positive Attitude, because they thought she should give up. Ashley showed us that a cure is 10% treatment & 90% Attitude. Ashley is an Extraordinary Young Women, a Hero.
Please help us continue her legacy by becoming a sponsor today.