Hayes Heroes - Magnus
Magnus is a super funny, light-up-the-room type of kid. He is 6 years old and everyone adores him. It's his voice. He has the sweetest, little voice and he can't say his R's or S's, and he speaks really slowly (likely due to brain radiation) and he is just always smiling and happy. He loves super heroes, playing video games, reading books, and playing outside. He is content and can be entertained by just about anything. He loves to be silly and he is the slowest person I have ever met ("Magnus, get your shoes on!" 20 minutes later.... "Magnus, where are you?" "Getting my shoes on!" Haha). He is literally adored around here and we all love him to pieces.
Magnus had stage II Ependymoma. It is a rare form of brain cancer, mostly seen in children. His was located in the posterior fossa of his fourth ventricle and wrapped around his brain stem. It was about 6 cm big, roughly the size of a golf ball. Ependymoma comes from the Ependymal cells that line the ventricles in the brain. Ependymal cells are the cells that produce CSF (cerebral spinal fluid) which makes it easier for cancer cells to travel around in the brain/spinal cord.
We found his cancer at the end of the August in 2014. The summer that Magnus was 3 1/2 was a busy one. He was just always the most easy going kid and never cried or whined about anything. He certainly never told us he felt sick or had headaches (which he likely did, constantly) He would randomly wake up sick throughout the summer. As soon as he would wake up, he would throw up. It happened occasionally and I started wondering if he had a food allergy. I thought I better keep a food journal for him, but never did. At the end of August, right before he was supposed to start his first year of preschool, the morning vomiting began happening more frequently. The week we found his tumor, he had thrown up every morning for 5 days straight. After that he would be fine and not act sick at all. I couldn't figure out what was wrong, but wondered if I should take him to the doctor. On Saturday night he complained of a tummy ache. I asked if he was just hungry and he said yes, so I made him some dinner. As he took bites of food, he would randomly gag. I told him that he was probably sick and should just go lay down, but he kept insisting he was so hungry and just wanted to eat (later we found that his tumor was connected to the vomiting center in his brain, and he was always super gaggy whenever he ate.... now we know why). Later he insisted he was still hungry and ate a whole banana in about 5 seconds. Immediately afterwards he told me he was going to throw up. As he vomited, he grabbed the back of his head at the base of his skull and just started shrieking hysterically, in immense pain. I had never heard him scream like that before, and have never heard it again. It terrified me and I told my husband I was calling the doctor. After relaying his symptoms she told me she was going to call Primary Children's Hospital and tell them we were on our way so they could get us right in and also to tell them to call in the on-call radiologist because he would definitely be getting a CT scan. Even after hearing that from the pediatrician, I still didn't think there could really be anything wrong. I never thought it would be us. After being quickly checked into the ER, we met the doctor and he sent Mag for a CT scan. Just about 10 minutes later he walked into the room with a defeated look on his face. I literally remember the horrifying feeling, the complete and utter shock that went through my entire body when he said the words, "I am so sorry, but your son has a very large mass in his brain." How? How could this be happening to MY child, MY baby? It just couldn't be possible. But somehow it was.
We are so incredibly thankful to be finished with treatment. Magnus actually just had his two year "cancer free" mark in January and we could not be more grateful. But it was definitely a very rough road, one that almost feels like another life. After finding the mass, we immediately met with the neurosurgeons to determine the best course of action. He needed semi-emergent surgery, due to the extreme amount of pressure the tumor was placing on his brain stem, but first he needed a very detailed MRI so the surgeons knew exactly what they were dealing with. After being admitted to the PICU, the nurses made him wake up every hour for neuro checks, and to make sure he was still alive. They later told us that had we not brought him in that night, he likely would have passed away in his sleep. They intubated him and took him away for his MRI at 4 in the morning. It took several hours and when they brought him back we only got to be with him for a bit before they were ready for surgery. They tell you all sorts of horrible things that can go wrong and you basically have to sign your child's life away before they will operate. It was easily the worst day of my entire life. Saying goodbye to him before they wheeled him away literally felt like my heart was being ripped from my chest. I couldn't stop sobbing, wondering if I would ever see my baby alive again. His surgery was nearly 8 hours. They called every couple hours to the waiting room to tell us how he was doing. He needed several blood transfusions throughout, but overall did well. My heart soared once I laid eyes on him again. He was so swollen and did not look like himself at all. They told us they had already sent a sample to pathology, but the surgeon knew it was malignant. I ignored them and in the back of my mind prayed it was benign. But after 8 days of recovering in the hospital, in walked the brain cancer oncologist, ready to tell me the future of my child. Statistics, treatment plans, the whole deal. It was a stage II Ependymoma. Cancer. Again, shock went through my body, but I was more prepared this time. Ready to face it and fight it. She outlined treatment. Localized Radiation therapy to the tumor bed for 7 weeks straight, every morning. It would make him sick and make his hair fall out. He would be so tired and lethargic, and lose weight and possibly other things. Complications could arise. After radiation, possibly chemotherapy for a year. She told me that this type of cancer doesn't respond the way other cancers do to chemo, but they like to use it anyway in certain circumstances, just to be safe. I immediately dismissed the thought. We would not be doing chemo. It didn't feel right. But we did the radiation, every day, for 7 weeks straight. Due to some issues that arose with his brain surgery, he had some other complications, He needed another surgery to help his CSF drain properly. He was also diagnosed with posterior fossa mutism and needed extensive therapy to learn to walk and talk again. He needed swallowing therapy, speech therapy, and vision therapy due to a damaged nerve that connected to his eye. Possibly eye surgery after eye patching for 4 months if it didn't "wake up" and start working properly. So many doctor visits, hospital visits, therapy visits. It never seemed to end. But it was all worth it when 4 months after diagnosis he was deemed "Cancer Free" at his post-treatment MRI. Best news ever.
I have so many hopes for Magus. Every four months when he goes in for an MRI, I hope that he remains cancer free. I hope that he will get to experience life and not take it for granted since he has been given a second chance. I hope he takes the opportunity to tell his story. I hope that cancer will be cured in his lifetime. I hope that the few limitations he still has because of cancer don't get him down. I hope he realizes that he is a miracle and that so many people prayed for him, and still do. I hope he always knows how completely adored and loved he is.
Some advice I would give to other cancer parents is to say yes. Say yes to any help that is offered. Let people help you! You will need it and be so grateful for it. Let go of your pride. You can't do it alone. That is why friends and family who love you will be there to catch you and lift you back up. I would also say to find a support group. Or a person who has had a similar experience. I was introduced to one of my biggest supports through a mutual friend of ours. She was my lifeline, as her son had the exact same cancer as Magnus. She answered all of my questions day or night. We had many of the same doctors and therapists. And then, when you are through it with your child, be that person for someone else. Don't push away the experience. Embrace it and grow from it and learn all that you can. You never know when your support will save someone else. And don't you want to be that lifeline for another person who is in the shoes you were in?
One of my favorite quotes through this whole thing was something a friend sent me the day we found out that our baby had cancer. I still read it often to this day:
"Cling to your faith. Hold to your hope. .. even if you cannot see that silver lining on your clouds, God can, for He is the very source of the light you seek. He does love you, and He knows your fears, He hears your prayers, He is your Heavenly Father, and surely He matches with His own, the tears His children shed. .. It will be alright in the end. Trust God and believe in good things to come." Elder Jeffrey R Holland
Even when things don't go exactly our way, I know that a loving Heavenly Father knows and loves my child, even more than I do. That knowledge helped me get through some very dark days.
A typical day now is just that: typical. And I love it. Magnus is now in an all day kindergarten program. He was delayed slightly due to brain radiation/surgery and needs a little extra help in school. But he is coming along and learning to read like a champ! He also loves math. I do see things that break my heart at times. He has a terrible memory (typical radiation setback) and he gets distracted very easily. He has a hard time concentrating if there is anything at all going on around him. He also struggles to keep up physically with his peers. He still tires easily and he runs crookedly. Small things, honestly, but I notice them, because I'm his mom. And I hate cancer for taking things away from him. He will also need therapies in the future (speech, occupational), but for now we are just taking it one day at a time.
Things that I really wish people realized is that just because he is cancer free and has been for 2 years does not mean he is "cured". It could return at any time and that is a very real fear of mine. The further away it gets, the less I think about it, but come scan time three times a year, it is constantly in the forefront of my mind. The "what-if's" are always there. The wondering about his future are always there. It will never go away. I wish people had more empathy. It can be therapeutic to talk about at times, even though it was years ago. It is a very real and scarring occurrence-- facing the mortality of your child. Seeing them become so sick and wasting away. It is horrifying. I just wish people understood and tried to be more empathetic. While this did not happen to me, I have heard of others being shunned or "wanting attention" when they talk about their cancer kids .That is horrible to me and I can't believe another parent would say such things. What if it was your child? Wouldn't you want all the support in the world?
I am most proud of Magnus now when he goes to get scans. He is so, so brave. And while it is not okay that he has to go through the pokes and prods and check-ups to make sure he is healthy, he never complains. He keeps his brave face on and wraps his skinny little arms around me when he has to get an IV. He tried his best not to cry and is always so relieved to be done. I am the most proud that he chose me to be his mom, to be the one to help him and support him and love him through this experience. I am so thankful he is mine, forever.