NavigatingLifeWithLMS

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Kailanie was born rare, a limited edition. Her diagnosis was Lateral Meningocele Syndrome (LMS). On February 9, 2018, she went from limited edition to one-of-a-kind with childhood cancer. Her new diagnosis, Acute Lymphoblastic Leukemia (ALL).

Kailanie has been in and out of the hospital all her life, well except for the first month or so. She has had a total of 20 surgeries and has been sedated for MRI’s more times than I can count.

The hospital is our second home. We have a running joke that when things go great for too long, she gets bored and has to shake things up with a hospital visit.

Kailanie has had more than a handful of brain surgeries, a G-tube placed, and jaw distraction, just to name a few. We are accustomed to dealing with scary circumstances, but nothing would shake us to our core quite like a cancer diagnosis.

Out of the less than 50 individuals we know that have been diagnosed with LMS, Kailanie is the first to have a cancer diagnosis, and this is why cancer makes her one-of-a-kind. Her rare syndrome makes her cancer treatment difficult. Not only is there a lack of literature on LMS, but there is nothing about treating leukemia, or any form of cancer, with LMS.

You might be wondering why a rare diagnosis would affect the treatment of cancer. Let me tell you why it is a huge issue in Kailanie’s case. Leukemia is usually treated with a series of spinal taps to check cerebrospinal fluid (CSF) for leukemia. Chemotherapy infusions are done directly into the CSF, whether leukemia is detected in the CSF or not.

The issue? LMS has a primary characteristic of lateral meningoceles. Meningoceles are sacks filled with CSF surrounding the nerve endings around the spine. The meningoceles weave in, out, and around the vertebrae.

The worst part? These sacks of CSF make it almost impossible for the nerves to more away from a needle. If  nerve endings were to be caught by a needle, the effects could be catastrophic. Also, there’s no telling where the chemo would end up, or if it would even circulate enough to make a difference. The lack of it circulating could also cause problems.

September is Childhood Cancer Awareness Month. Did you know 43 children a day will be diagnosed with cancer, and more than 95% of the survivors will have long-term side effects from treatment? Cancer is the number one cause of death to children by disease. Sadly, only close to 4% of funding for research will go towards childhood cancer.

Can I ask a favor of every one of you reading this post? Please, help raise awareness for childhood cancer. You could update your Facebook profile picture with a childhood cancer awareness frame, donate to research, donate blood (chemotherapy tends to have a negative effect on all cells and causes problems with blood production), these are just a few ideas.

If you donate money for research purposes, make sure your money is going to a foundation directly supporting childhood cancer research. The National Pediatric Cancer Foundation is a top-rated cancer charity in the United States. This a good place to start donating. You can create your own fundraiser through them. Kailanie’s Crowd might be organizing a fundraiser in the near future. You can also donate in honor of someone…feel free to put the name Kailanie in that box 😉.

DON’T FORGET!

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