This is Aunt Connie, Cassie's big sister, Kayla's (favorite) Aunt. I am starting this blog with Cassie to have a central place to keep Kayla's enormous circle of loved ones informed of her condition as she progresses and she goes through this journey.
What "condition"? What "journey"? you may be asking these questions... or the most pressing question we get... "What happened to her head??" So lets get right to it....
Kayla was born with a condition called Lymphatic Malformation (LM). It's rare. Like most people, you probably have not heard of this condition before. And although the Doctors noticed a 'squishy' spot on her forehead, Kayla looked perfectly normal at birth:
Lymphatic Malformations result from abnormalities in the development of the lymphatic vascular system during embryonic growth, it affects boys and girls equally, no one knows why it happens in approximately 1:4000 live births. There are two types, macrocystic and microcystic. Macrocystic and microcystic lymphatic malformations are differentiated by the size of the fluid-containing portion of the malformation. The macrocystic type is made up of large cysts, more than 2 centimeters in diameter; the microcystic type is made up of smaller cysts or soft tissue enlargement without cyst formation. Most lymphatic malformations have both macrocystic and microcystic portions and histologically there is no difference between these categories.
Kayla's condition is believed to include both types, making treatment difficult. Sometimes LM are a condition of a larger syndrome. Thankfully, that is not the case the case with Kayla, she is a perfectly normal, healthy, happy, feisty little girl.... just with a big bump on her head!
To read more about Lymphatic Malformation you can visit here: https://rarediseases.org/rare-diseases/lymphatic-malformations/
So how do we treat LM? Why don't they '"just remove the bump"? Unfortunately, it's not as easy as it sounds. Because Kayla is young and healthy, and LM is complex and rare there are just not a lot of proven effective options or specialists available. There is a lot of experimentation and poor results. And until recently Kaylas malformation was considered "simply" cosmetic.
For Kayla, she was not diagnosed until she was 4 months old. Her "bump" initially considered to be swelling from labor and birth but continued to grow as she grew. Like I said before, other than this bump, she is a normal developing, happy, healthy girl. We kind of all held our breath hoping it was going to just go away! Here is Kayla around 4 months...
At Kayla's normal 4 month check up, Cassie insisted the bump, which had grown but was not yet affecting her eyesight, be investigated. An ultrasound confirmed a LM. Since then, over the past 6 months, Kayla has been through two treatments of sclerotherapy. This involved putting Kayla under general anesthesia and injecting the individual overgrowing lymphnodes to create scarring which eventually will hopefully collapse the malformation. There is a period of healing then a period to gauge its success before a new plan is made. Here is picture of sweet Kayla after the first sclerotherapy...
and the second...
Unfortunately, as you can see, sclerotherapy has been ineffective for Kayla's malformation and it continues to grow as she grows. Recently her ophthalmologist has determined her blocked eye is beginning to develop Amblopia. Cassie and Sean have been instructed to patch the "good eye" so she will work harder to use the eye being blocked by the malformation. A frustrating but necessary ordeal for both Kayla and Cassie and Sean and everyone who is involved in her care. Kayla has become pretty efficient at tearing off the eye patch! This diagnosis has made seeking a more aggressive treatment of the LM more urgent.
So that is where we are as of today. Thank you for taking the time to read this.
Tomorrow I will send an update on an exciting but frightening and unnerving option that we are pursuing. Cassie has been steadfast and determined to find the best solutions for Kayla long term. At only 25 years old, working full time and taking care of her family, she is doing an amazing job. I hope she knows how lucky Kayla is to her her as a mommy.
You can send any messages directly to Cassie at courageouskayla@gmail.com.
Much Love for all the prayers and concern for Kayla,
Connie
I will be praying for little Kayla, her parents and her medical team.
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