A guest blog post by Michael P.
Kaposiform Lymphangiomatosis (KLA) is an extremely rare condition that usually affects kids. Well, it’s the condition that I have. I am Michael P. age 11.
This all started when I was just 5, turning 6 years old.
I did not want to eat, my bones hurt, and I did not feel up to playing and had bruises everywhere.
I was in grade 1 and went to a private school where the gym teachers were very strict. Even though I could not run, the gym teachers expected me to. I would just barely make it around the track. Meanwhile, everyone else was already inside. I felt left out and could not do what the other kids could and it made me feel bad. I remember one day when I was running on the track, in last place, I thought to myself, “one day, when I’m in fifth grade, I will be able to run this track.”
Well, I showed them — my wish came true! I am now in fifth grade and I can run fast!
At first, the doctors didn’t know what “it” was. They tried everything. I had so many tests and felt so poked and prodded. I remember running away from Ms. Angie who was drawing my blood, screaming to my mom, “don’t let them do this to me, Mom.”
I had IVIG treatments which made me feel so sick, two bone marrow biopsies, a muscle biopsy, whole-body MRI’s (where I had to lie still for over four hrs) every six months, pulmonary function tests, 6-minute walk tests every six months and blood draws every three months. When my platelets got so low, the doctors had to start chemotherapy which made my hands go numb and my feet feel tingly. I had to do this every week for almost a year.
At my first hospital stay, the doctors had no idea what was wrong. I had frequent visitors (my friends), though. When I finally got out of the hospital, I played baseball to stay active. It was very fun. After that, our family went on a trip to Michigan to take our minds off things. That backfired, though. While we were there, I bumped my head (we still don’t know how), and it was bad. At first, I didn’t realize it. I was sitting on the swing with my mom, she felt my head, and knew something was wrong. She wrapped bandages on my head (I looked like a mummy), I felt awful, my head hurt and I was constantly vomiting. My parents rushed me to Mott’s Children’s Hospital. They gave me an IV, but it kept falling out and I cried. We finally got a good IV placed BUT … in the middle of the night it fell out. There was blood everywhere. My mom woke up and was freaking out. I was calm and just said, “Grab some towels Mom; it will be fine,” but instead my mom who by the way is a “surgeon” pressed the code blue button (yikes!). There were a lot of people in my hospital room all at once.
There were many bad things about the hospital, but the food was great! I loved the pizza, and I would always get breakfast in bed.
After that whole ordeal, we went to the Boston Children’s Hospital and luckily met with Dr. Denise Adams. She had a feeling that I had KLA and knew just what to do. One secret about Dr. Adams - she has a drawer filled with shoes. And, she is super nice!
We went and had a biopsy done at Johns Hopkins. A lucky part about being in the hospital was that we got to leave on Halloween, meaning that we trick-or-treated inside the hospital, and outside! We got so much candy! I dressed up as Mario, but I had to wear a mask, so I changed my costume to Dr. Mario!
I was unable to go to real school, because the medicine I am taking (Sirolimus) made me vulnerable to germs like viruses, so we (my brother Matthew and I) had homeschool.
I now have a great homeschool teacher named Mrs. Downs who is the absolute best and cares about me so much even if she gives me too much homework.
While I was having treatment, I had 3 important people that helped me out. Ms. Alyson, Dr. Takemoto, and Ms. Emily. Ms. Allison placed my IV weekly and then I went up to the peds oncology unit and Ms. Emily gave me the chemo while my Mom watched closely. Dr. Takemoto was there to make sure I was okay.
At the end of my chemo treatment, I got to ring the bell, wear my PJs outside, do the Happy Dance with my brother Matthew, and eat chocolate cake.
I thought all was done when at a normal checkup with my pediatrician, Dr. Goldstein, he noticed my spine was curved. I had scoliosis. I had to go to Virginia and make a brace with Dr. Luke and the National Scoliosis Center.
I was entered into a study with Dr. Crane and Dr. LeCras. I earned gift cards to Game Stop. Dr. Crane and Dr. LeCras worked together and figured out what they called a “novel treatment” which they wrote about in a “case study” all about me!
My platelets have skyrocketed from when this all started until now, and they continue to rise every day. That’s a good thing! It was hard, but I got through it, thanks to everybody’s help.
I am lucky that my doctors, nurses, and other medical support have worked together to help me. Hopefully, the information they’ve gained from treating me will help other kids to have the great same treatment so that they can run, swim, and climb like I love to do.
I hope my story will encourage people to donate money and to support research. It’s for kids like me, “Michael P.” so that kids can stay strong for the good times to come with our family and friends.
Last year, Michael made this video of his journey, The Power of One. In May 2019, Dr. Stanley Rockson showed the video at Lymphatic Forum 2019. Exploring the Lymphatic Continuum in Austin, TX.
Some of Michael's family photos from Lymphatic Forum 2019:
Michael (center) with his mom, dad, and brother Matthew.
Michael's family with Cam Ayala (left)