Cancer Survivor Stories

Michelle’s Journey with Medulloblastoma

“This all started in summer of 2015. I was 40 years old and up until then I was an able bodied woman looking after my son who was 4 years old at the time. I had very bad headaches which I thought were migraines, so I took some painkillers but they didn’t do nothing. I still had the bad headaches. While walking my son to school one day I had to hold him as my balance was so bad while walking.  I also remember being sick and having dizziness like symptoms at times. It was after these symptoms that I thought something was wrong, so I went to doctor who then said I must go straight to hospital. At hospital they did a MRI, which when they told me I had a brain tumor in the area of my cerebellum, my life changed forever. My family were informed. After this diagnosis  I went to Addenbrooke’s Hospital in Cambridge for care . I was informed and given advice of what may happen. I  also was asked whether I agreed to consent to surgeries. I had two operations, which I agreed to. I can’t remember much after this time frame, as I had a very serious brain infection and I was in the intensive care unit for a while.  I also had two additional operations to remove the infection of which I can’t remember the details, I was too ill at the time, so my family informed me.   After this I recovered in the hospital for some weeks, not being able to walk far at all and was in a wheelchair for the most part. Even the most simplest tasks like toileting had to occur while in bed or in a bedside commode. I did have balance problems after operation, it wasn’t related to tiredness for why I couldn’t walk far. I also had swallowing issues, so I had stuck to eating yogurts in the hospital. After some time, I was moved to a hospital closer to my hometown of Suffolk near the coast. I was given a NG tube for feeding. I still did eat by mouth but it was mainly puree stuff, as I had swallowing difficulties. After staying there for months, my walking improved a little and I started to use a four pronged walking stick to walk short distances like from the bed to the toilet. I disliked having the NG tube, so they changed it to a peg tube in my stomach for feeding nutrition, which again I was still eating pureed food by mouth. After I left the hospital I went to live in a residential home with 19 other residents, whose were mostly disabled in some form. I had my own room and there were caregivers in the building 24hrs a day for help and to administer medications, etc. I had a physical therapist assigned to me for exercise, such as learning to walk again on my own and going up stairs.   I also had a speech therapist for swallow issues and speech exercises which I did. The physical therapy helped me enormously in getting back some strength in my legs and arms. Overall it gave me confidence and hope for the future. We moved again in January 2018 and since moving I have improved a lot. I am walking every day and don’t use a wheelchair. I really now only use a walker to assist with balance but balance is much better now than before. I have started using my four pronged walking stick outside for walking longer distances, as it is more steady.  I was a Christian and went church before my operations, I was baptized too. After a few months I had another scan revealing the cancer had come back and it was around the brain. The doctor came to me and my family and revealed I had a few months left to live, which was devastating. Thanks to my brothers, I went to church for healing. They prayed and put hands on me asking for healing. They also held prayer meetings for me.  The minister also came to see me directly and we had prayer sessions . After this, I had radiation therapy but was told it wouldn’t reach the location of the tumor. I had 30 sessions of radiation therapy which would only delay the progression of cancer and add only months to my life. I was  scared, obviously and couldn’t really understand what was going  on. After t received the radiation therapy, they repeated the brain scan and to everyone’s amazement the cancer was no longer detectable. I went to see my consultant, who had tears in their eyes down streaming down her face saying “this doesn’t happen, it’s a miracle!”.  It is now nearly 2 years that I have been clear of cancer. Unfortunately I lost my faith and became very angry at God for having this happen to me. But then it made me wonder “did God heal me?” “And did the radiation therapy help?” I don’t know but I now thank God for this healing revelation. I would encourage others to seek His help because miracles like this do not happen every day but I am so blessed. I am eating more normal now, although the speech therapist during my swallow evaluations still says to stick to a purée diet which I dislike now but I know I have to be careful what I eat. It is a risk but I am aware of it and I do worry that I may aspirate. To be honest, I know what I can and can’t eat and if I cough while eating, I stop or correct it. When I drink fluids, they tend to be more difficult, so I have to put thickener in it so that I can drink it. I have given up drinking any alcoholic beverage and glad I did.  My speech is clearer than last year but it is still a bit slurred. I practice talking as much as I can and sing, or try to. I definitely have more strength in general, as I have joined a gym. I would say being brave has helped me build confidence to this day and not being being afraid to try new things and to push yourself to do new things . My determination and bravery have helped me through all of this and I would say trying to be positive about my conditions to continue to make goals and to achieve them. I advise not giving up on your dreams. Cancer is hard but be thankful for things you still have and can do while not letting it rule your life.”

Michelle- from Cambridge


Our Journey Through Cancer

The ED Visit

November 30, 2017

Anthony never made it to school that day and I never made it to work, not knowing that once we walked through those automatic sliding doors of the Emergency Room department that we would end up leaving later that evening in a helicopter. Anthony would not return to school for several months and I would stop working for a total of 16 months.

It was 9:20am and we had already been in the ED for about half an hour. ED visits always seem so much longer than what they really are. The waiting time is daunting while you wait and figure out what got you there in the first place. Ricky (Anthony’s dad) and I sat at Anthony’s bedside while the nurses did their assessments and drew blood for lab tests. Those of which did not indicate anything was wrong. The initial physician who evaluated Anthony wanted to also disregard his symptoms as gastroenteritis but parents who know their child better than anyone else, we knew that could not be the case. I asked the physician if he could at least do an imaging study to rule out anything in his abdomen (me of course praying that it had nothing to do with his brain as my google searches had determined). He ordered an ultrasound of the abdomen and that resulted in no abnormality either. So now what?

Well you should never take what you are told at face value if your intuition is truly telling you something different and in this case if it involves your health or that of your child. So being a nurse and knowing what lingo tends to put physicians in a hard spot, I pulled that card and told him I did not feel safe taking my son home like this without further evaluation. At that point he called in a pediatrician for a consultation, the person who would change our lives forever.

The pediatrician that evaluated Anthony was very thorough and took her time in evaluating him. She spent a good hour with us in the room while she gathered a detailed history and performed a head to toe assessment on him. I noticed toward the end of her assessment she focused mostly on his eyes. She noted he had bilateral nystagmus and while examining his eyes with a opthalmoscope she verbalized that she wanted to order a MRI of the brain. She did not state it at the time but it was confirmed later by the opthalmologist what she must have seen that warranted her to order the MRI is his optic nerve was not visualized in a straight line as it should be.

As a nurse, I already knew that physicians do not have the tendency to order such imaging studies, especially that of a MRI of the brain, unless they have an inclination to rule out something bad. But even then, you hold on to any fragment of hope you might have that nothing potentially life threatening can be wrong.

I accompanied Anthony to his MRI, which as a limited MRI so it only took about 20 minutes. Upon walking out of the MRI room, one of the MRI techs asked “do you mind telling me what symptoms prompted you to bring him in? Was he stumbling while walking or having headaches?” I simply replied that he was only having intermittent episodes of vomiting, as she then replied with “Oh.” That was already a red flag that a tech must have seen something on the images that sparked her interest to want to ask me. Which if you’re in the healthcare profession, you know that she should have never even asked me that information. But I did not have enough time to process it all, soon after we were headed back to the room.

As we were transported back to the room, with Anthony on the gurney to be reunited with his dad, there two physicians walked in behind us. One of the physicians was the pediatrician that had evaluated Anthony and ordered the MRI and the other we have never even seen prior to that moment. Again, I knew this is usually not the case if the results of that MRI had been normal. The pediatrician asked if she could speak to his dad and I outside of the room while the other doctor stayed with Anthony.

Before she could speak tears were already running down my face. Unfortunately being a nurse I know a little too much and knew that the next words that would leave her mouth were not going to be good news. Her demeanor gave it all away. She could barely look at us in the eyes and I could see her hands as she looked down at the floor. Sure enough within the next few seconds she verbalized the words “I have some news and it is not good news. We found a mass/tumor in Anthony’s brain.” Within those seconds I felt the blood leave my finger tips and my heart collapse. I could barely breathe and was drowning in my own tears.

Thank God I was not there alone in the ED with Anthony because I am not sure how I would have taken the news if I were by myself. Although Ricky was devastated as much as I was he was able to keep it together for the both of us. Before we were reunited with Anthony in the room, the pediatrician walked us over to the nursing station to show us the MRI images and point out the mass in his brain. It was surreal and a complete indescribable feeling what I felt at that moment. As I type these words, now 460 days later, it still all comes back to me so vividly. Like a nightmare I will never fully be able to wake up from. Because unfortunately this has been our reality.

Cancer Survivor Stories

Dylan’s Fight Against Brain Cancer

“My son was a freshman in college in April 2016 and had just been home for spring break three weeks prior to the diagnosis. He seemed perfectly fine with no symptoms. Two weeks later, he sent me a text saying “I’m having trouble sleeping.” He said that whenever he laid on his left side, he became extremely dizzy and would have to sit up. I asked if he had any other symptoms and he said no. He had a cold/cough the week before, so I said it must be an ear infection. Easy, right? I told him to go to the campus doctor to get checked and get antibiotics for his obvious ear infection. He said he didn’t have time. A couple days later I checked back in on him and he said he was still experiencing this but it “wasn’t so bad and that he would go to the doctor if it got worse.” A week after the initial text, he told me he woke up vomiting. That’s when I urged him to go to the doctor. The campus doctor said he appeared fine physically and sent him home with an anti-nausea medication and told him to come back in the morning to let her know if it helped or not. She said if it didn’t, she would like to order a CT scan. I went with him the next day for the CT scan as he was nervous. We waited two hours for the results. I can vividly remember the doctor coming in the room, eyes wide open, ears red, and voice shaking. “There is a mass on your brain.” I sobbed. Being told your child has cancer is an indescribable pain. Our lives were forever changed in that moment. Two days later, at the hospital to meet with a brain surgeon and get an MRI, my son became violently ill. The surgeon feared the tumor was growing rapidly and placed him in the ICU and was able to get his vomiting to stop. He had emergency surgery the next morning and they successfully removed 98-99% of the tumor. It was confirmed cancerous, Medulloblastoma.”

” His treatment plan consisted of six weeks of radiation along with Vincristine, then nine rounds over the course of a year of inpatient chemotherapy where he received Vincristine, Cisplatin, Lumostine, and Cyclophosphamide. What helped him physically during chemo was staying on top of his anti-nausea medications. Around the clock, he was given multiple different medications: benadryl, atavin, kytril, a patch behind his ear (scopolamine patch), steroids, emend, etc. It was a full time job for me to keep on top of this in order to keep him from vomiting. However, mentally he was struggling. He was an active nineteen year old with his whole life just beginning and suddenly, this. He was stuck at home or in the hospital while all of his peers were living life. He was extremely scared and anxious on how his body would handle the chemo and fearful of the tumor returning. We were able to address this with a psychiatrist trained on treating young adults going thru cancer and placed him on a medication (Remeron) that helped him tremendously during treatment.”

“What helped me as a parent was, I joined a Facebook page called “Parents of kids with Medulloblastoma” and immediately began looking for the survivor stories. The success stories. I needed to feel hope and be encouraged. I started talking to other cancer moms. We all have the same fears. We just want our kids to survive, to be happy, and to live life. We joined a local group called “A Special Wish” Not only do they grant kids a “big wish” but they also give “sparkles of joy” throughout your journey. They sent us out to dinner, basketball games, football games, special events, anything to provide some joy during the most difficult time of your life. We celebrated everything, big or small. I made sure that the weekend before an inpatient stay, we would do something fun. Either a nice dinner or an outing. Because we never knew what the next round would do to him and we knew his counts would crash and he wouldn’t be allowed in public for a while.”

“My advice for other parents is to do your research, become an expert on your child’s cancer. Take notes, keep a journal. I had a list of questions for the oncologist almost every visit. Become an advocate for your child. I relied heavily on a pocket calendar to keep track of all the appointments, as there will be many. Take whatever help you can get in the beginning as far as meals, errands, babysitting your other kids, etc. You will be completely overwhelmed and so focused on your cancer child and any help is greatly appreciated. Keep a bag packed for those unexpected hospital admissions. We also started bringing our own pillows/blankets for admissions to feel some comfort from home. Reach out to other parents going thru the same. Nobody else will understand you like they will. Take lots and lots of pictures to look back at once treatment is over so you can remind yourself how far you’ve all come. I now volunteer for “A Special Wish”, as it was important for me to give back, and especially to help other parents in the trenches of cancer.”

Stacy Slovett, Dylan’s mother.

Instagram: @slovett04