May is Neurofibromatosis Awareness Month and we want to encourage all of our readers and followers to do their part to educate themselves about NF, help find a cure, and spread the word to others! Neurofibromatosis became a very serious and important subject to us a few years ago and now we wait, hope and pray that one day we will find a cure.
So, what is Neurofibromatosis?
NF refers to a number of genetic conditions and carry a very high risk of tumor formation, particularly in the brain. Although Neurofibromatosis is a genetic disorder, half of the cases show no prior disorder in other family members. The severity of issues and symptoms vary, though, if one parent has NF, there is a 50% chance their children will also develop the condition. There are currently three types of neurofibromatosis: NF 1, NF2, and Schwannomatosis. Liam has been diagnosed with NF1, which includes tumors that grows on nerve tissue that may be benign, but can cause other serious damage by compressing nerves and other tissues. His tumors are on his optic nerves and growth can cause vision issues, blindness and even hearing problems over time. In addition, NF1 children are 5 times more likely to experience developmental issues, including learning disabilities.
Liam's Story
Liam's story is far from over, but he has already been through so much and is our little hero. There are so many children affected by this disorder and the more we learn about it, the more doctors can do for our babies.
Liam was a preemie and his lungs were not fully developed at birth, but we had no idea the future would bring more health issues. For almost 8 months, he was a happy little fellow who seemed content with his family and was rarely sick. Then, almost four years ago, I was writing a blog post about birthmarks and realized Liam had an uncommon amount of café au lait spots all over his body. While researching birthmarks, all the websites said to contact a pediatrician if your child has more than 8 café au lait spots. At that time, Liam had 18. I was in a panic as I called and scheduled an appointment with Dr. Cheek and, two days later, we went in to discuss what this could mean.
Dr. Cheek honestly didn't know much about Neurofibromatosis and I certainly didn't. Yes, I've watched programs on TLC and other channels about extreme cases of NF, but nothing about babies and children with NF. So, he referred us to a neurologist and, a few weeks later, Liam was scheduled for his very first of many MRIs. The first MRI showed no growth, but the results changed in 2012. The neurologist found two brain tumors, one on his optic nerve and one deep in his brain. At this point, we were referred to a pediatric oncologist. Continued growth was found and, in September of 2012, Liam began chemotherapy to shrink his brain tumors. After three months of treatment, another MRI was given and we found out that the chemo was not working, so we changed to a different chemo treatment that would last from 9-12 months.
During those months, we experienced the ups and downs many NF parents experience. It's so hard to see your little one in pain, but you also witness the amazing braveness children exhibit when met with such a huge challenge. Liam is such a happy little boy that you'd never know he spent the weekend in the hospital due to a high temperature or couldn't eat for days due to mouth sores. As a parent, you feel helpless because you want to take that suffering away, but it isn't possible.
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| Liam playing during a chemo treatment at the Aflac Cancer Center |
Liam has been on a chemo break for almost 6 months and his next MRI is coming up in June. This will determine whether or not he will continue his treatment. It's really a wait and see situation that many children go through because NF varies by child and you never know when the tumors we begin growing again. There is no rhyme or reaaon to NF, which is one of the main reasons it is such a frustrating mystery. Liam's oncologist doesn't know when it will happen, but knows it eventually will and, when it does, we will be back at the hospital each week for treatments once again. The tumor growth is sometimes linked to growth spurts and tends to decrease once children go through puberty. Neurofibromatosis will always be a part of Liam's life, but even more so until the tumors become less active.
Since first discovering NF, we have met some amazing people, from Liam's nurses who treat him like a special little man every time we come for a visit, to his doctors (Dr. MacDonald and Dr. Castalino) who are dedicated to fighting NF and finding a cure. There are also doctors in the Atlanta area attempting to put together a new NF clinic where they can further research and bring other NF families together. In addition, Liam's wish through Make A Wish Foundation was granted last September and we visited the most magical place on earth, Disney World! The outpouring of support from our friends, families and other non-profit organizations has been not only helpful, but uplifting.
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| Braves Night with the Aflac Cancer Center. Liam met Tim Hudson! |
Looking at my NF Hero, I see a brave little boy who can accomplish anything and I'm determined to do my part to find a cure so that he and other NF heroes can one day live without the worry that the next MRI will show tumor growth or that the current chemotherapy treatment is not working. I am hopeful that one day, chemotherapy and doctors appointments will not be a regular part of Liam's life. When a new breakthrough in NF research comes out, we jump for joy and our hope is renewed. That's why during May, Neurofibromatosis Awareness Month, we encourage others to learn about NF and what they can do to support our NF Heroes and those who are also searching for a cure.
For more info on Neurofibromatosis, please visit the
Children's Tumor Foundation website. They are a wonderful resource and do so much for our little guy. Please share Liam's story with others. Together we can #EndNF and spread awareness!
