Homebound Student Claire Swanson's Journey with Mast Cell Disease PLUS
THE WOODLANDS, TX -- We're doing our WOL Student of the Week segment a bit different this time. You're about to meet a CISD Homebound student that deserves more than just a week. This young lady has been through more mental and physical anguish than someone 60 years her senior, and yet she maintains the most positive attitude I've ever witnessed. Her nickname should be Job. In the book of Job in the Old Testament, Job is a righteous man who is tested by God, enduring many tragedies and hardships while struggling to remain faithful.
Yeah, I know what you're thinking...Oh here we go, another person's opinion in the 'Who's had it worse' category... To me, this person is so amazingly strong and durable. Here I am 60 years old and my entry is a 17-year-old Homebound CISD junior through The Woodlands High School.
Claire Swanson is so strong and caring for other people that she comes last in her own world. When you see Claire, you see pure, raw, unmovable strength. Her mother can tell you she could not have survived what she has seen happen to Claire. She is joyful and loving and only sees the good in people. You can't say anything bad about another person because she'll always say you don't know what that person is dealing with. People confide in her as she is the keeper of secrets. You will never find judgment when you go to Claire. She is always a soft place to land and she gives enough space for everyone to have a place in the room. She will change every person that allows her into their lives. When she leaves the room, she leaves a part of herself with everyone there...and that room? It is always more beautiful than before she got there.
Let's clear up what Homebound student means. It's close to being home-schooled, except the student can't physically go to the school in their zone because of circumstances beyond their control. Its definition: Unable to leave one's house, typically due to illness. That would be accurate in this case.
You'll not only be learning about Claire Swanson, you'll be getting an education in Mast Cell Disease (MCD) and the many issues that arise when suffering from MCD. Here's a real quick summation and I'll get back to it in length later on. MCD includes two rare typically progressive diseases, Mastocytosis (cancer of the mast cells) and Mast Cell Activation Syndrome or MCAS (Dysfunction of the mast cells). In both illnesses, you have mirroring symptoms and treatments. It's complicated, especially because she developed two more diseases, to include MALS (Median Arcuate Ligament Syndrome) and POTS ( Postural Orthostatic Tachycardia Syndrome) as I was putting this story together.
In addition, she went through multiple misdiagnoses such as being told she had anxiety, Crohns, Celiac Disease, Cyclic Vomiting Syndrome, IBS, Abdominal Migraines, Lactose Intolerance, Asthma and her mom's favorite, 'Mrs Swanson your daughter has a psychiatric problem and we have an inpatient psych bed for her.'
Again, I'll do my best to describe what Claire goes through. Just keep in mind from the age of 1-12, she always had these medical issues and that was difficult enough, but add in that the medical community to that point kept telling the family there was nothing wrong with her. They were obviously wrong...and in this case, clueless. When she got to junior high school the proverbial manure hit the fan and these demons inside her had waged an all-out war. A war she continues to gallantly fight with every fiber of her being every second of every day. It took until she was 15 years old and thousands upon thousands of miles traveled here and abroad to finally be diagnosed correctly.
Let me introduce you to WOL Homebound Student of the Year, Claire Swanson!
Up until 7th grade, you were involved in several activities to include horseback riding. You could say you were blazing a trail. It was at that time when your medical condition worsened and you had to forego just about all of your physical activities. Describe for us what you miss most that you can't do now:
Well, I don't like talking about myself but I'll do my best. I do love horses and they were my true passion in life. I was an uprising equestrian doing well in my division. My parents had purchased my dream horse and things were looking really good. Then, all of a sudden it was all gone. The relationship a person can have with a horse is special. It is very difficult to describe how much it hurt to lose that relationship. I played lacrosse, too. Some of my best friends are girls I played lacrosse with and those relationships will last forever. But, the feeling of being on a team and striving for the same goals is life changing. The camaraderie and team chemistry developed when you have good coaching is something you remember forever. I miss that so much.
Tell us what a typical day is like for you:
This is a tricky question. One of the things I learned when I got sick was that no day will ever be the same. Some days begin at 3AM in the emergency room, while other days have a more normal beginning. Each day is a battle to keep my symptoms at bay and under control. Some days I spend hours on the bathroom floor not able to move, waiting for symptoms to subside writhing in pain while at other times I'll wake up feeling more 'normal'. No day is ever the same as another day.
With your medical condition, you’ve been through a lot of peaks and valleys. Who do you look to, to draw your strength from?
With complete certainty I can say I receive all my strength and will to fight from God.
Through this journey I was taught one of the most important life lessons, my battles are not mine, but His. My strength alone will never be sufficient. I had to learn, when I turn over my weakness to God, He will provide me His strength.
You attempted to physically go to school at the start of this school year and it lasted a week. The whole process of finding that you're not ready for that had to be disappointing. Do you like TWHS?
I truly do love TWHS. I definitely have a bit of a unique situation and all of my teachers have been incredibly accommodating. Traveling for doctors and being in and out of the hospital can make school tricky, but everyone at TWHS has made sure to set me up for success. Teaching is such an important occupation and it isn't easy with everything they have to do. You can imagine how having a Homebound student might add even more to their workload. I try to be a good student and make things as easy as possible for them.
What colleges are you looking into attending?
What do you hope to be doing after you graduate from college?
Some of my top picks are Auburn, Clemson and the University of Tennessee. As for major, I’m leaning towards something in the Biological Sciences. Once I graduate, I have hopes of becoming a Genetic Counselor.
What do you enjoy doing away from school?
While not doing schoolwork I enjoy hunting with my dad, late night drives with my friends and traveling.
Describe how supportive your family is in everything you do in your life:
Without my family I don’t know what I would do. Even when doctors lost hope, my parents never did. They never stopped fighting for me, and flew me to some of the best doctors in the world, offering cutting edge medicine. I can’t forget my brother, Reece. He has the gift of being able to cheer me up and put a smile on my face, no matter the situation. My family is my backbone and I’m eternally grateful for them.
If you were given a million dollars and had to give it to one charity, which one would you choose and why?
If I were given a million dollars, I would donate it to the National MALS Foundation. I was diagnosed with MALS this year. The only treatment option currently available is an extremely risky surgery, that happens to only be effective about fifty percent of the time. Without treatment, patients eventually are not able to eat food as a result of extreme ischemic and nerve pain. The National MALS Foundation uses funding for research in hopes of finding better treatment options for patients.
Three things that people don't know about you.
When is the last time you danced? Where? You any good?
Three things' people don’t know about me:
I used to do motocross.
I’ve kept every card I’ve ever received since age ten.
I'm pretty sure it's impossible for me to parallel park.(laughs)
The last time I danced was in the hospital when they told me I was being discharged. And no, it was awful.
What is your favorite song in your phone now? Do you have a favorite group?
My favorite song of all time is, Blue Skies by Willie Nelson. My Mimi loved Willie, and Blue Skies was her favorite song, so I guess it kinda rubbed off.
My favorite artist right now is Cody Jinks.
Your favorite movie of all time:
I’m not really a movie person but I could watch The Sound of Music all day.
If you were sentenced to death but you were allowed to go on one last date, who would the lucky guy be?
Well, this was easy, Shawn Mendes. Kinda basic, but the only right answer.
Claire, if you don't mind, I'd like to ask you some questions relating to the pain you endure so people can get a general idea of what you are dealing with. You just had a successful surgery in Baltimore. Can you discuss the procedure?
Well, for the MALS surgery the incision went all the way into my spine. Keep in mind that half of the surgery was in my diaphragm so I couldn't be given an epidural in there because I would stop breathing. Because of that, it wasn't fun after the surgery. I just get through the pain with help from God and those close to me and also from knowing there are so many people out there that have it worse than I do.
They cut through my abdominal wall against 'the grain'. Then they moved half my organs to the left, and half to the right....then they cut through the lesser sack and cut through the peritoneal cavity. The doctor could then visualize the aorta that lays on top of my spine.
Interviewer: Claire sent me pictures of which we can't share but the pre-surgery picture shows that a ligament was strangling her celiac artery that is beneath it. Then I looked at the post-surgery picture and it showed the celiac artery once he removed it. Mom's words. 'Look how beautiful and straight it is.'
I wish you could see the before and after. For those of you average people like me, picture going to a house and finding the lawn, bushes and garden hadn't been tended to for a year. Then picture going back the next day and it looks like the White House South Lawn. I know, right! Those specialists are nothing short of amazing.
Back to Claire: So...what he did was take out the Median Arcuate Ligament. That means I no longer have MALS (Median Arcuate Ligament Syndrome). My mom told me I kicked MALS balls! (laughs)
I LOVE THIS FAMILY!!
Regarding MALS, just how rare a disease is it?
Compression Syndromes are very rare. To give you an idea, there are 300,000 appendectomies a year and there are approximately 400 MALS surgeries a year. It's like looking for a needle in a haystack working backwards. I was warned there would be a lot of medical trauma. They weren't lying! My mom will provide you with all you need to know about what it takes to contract MALS, what exactly is going on in the body and what it takes to make it right. (Interviewer's note: You'll find that in the attachment, post release.
Interviewer: (Read more about MALS and also POTS in the attachment. NOTE: POTS is always a secondary diagnosis.
Talk to us about Mast Cell Disease. Can you describe a mast cell attack as to what is going on inside of you? Then talk about how it affects you and where you have been when the attacks have occurred.
I struggle the most from mast cell attacks which is where mast cells degranulate and release harmful chemicals into my bloodstream. Usually, it starts with a feeling of impending doom, then I start to run a fever and become uncoordinated. After that, the severe abdominal and bone pain starts along with a string of cardiac symptoms. Eventually, I'll lose my vision and my body will go numb. This all happens within a two-minute window and if medication isn't administered fast enough there isn't anything that can be done except call an ambulance. I've had attacks while on airplanes, at school, while riding my horse and hiking in the mountains of Wyoming to name a few.
We'll be taking a break from the interview while you see what a family friend has to say about Claire...
Enter Jen Cole. Mother of Claire's good friend and former lacrosse teammate, Jesse Cole...
'To gain more insight into our Homebound Student of the Year, here's what family friend, Jen Cole has to say about Claire: 'I have known Claire since she was six years old and the two words that come to mind in regards to her character are joy and grit. We all know that happiness is fleeting and often times affected by our environment. Joy, however, comes from within and is something that no one can take away. Joy is a feeling of happiness that is dependent on who Jesus is rather than on who we are or what is happening around us. For Claire, this joy stems from her deep faith in the Lord her Savior, the one who walks by her side in good times and bad and the one who has a plan for her even in the midst of sorrow and pain. You see-Claire will tell you, even in the times that she is in such great pain that it is hard to take a breath, that God has a plan for her. As an adult, to see a child with this great gift is inspiring. Over the years of dealing with her illness and in the most recent months of trying to find a diagnosis, Claire has seen many ups and many more downs. She has had days filled with hope that there’s an end in sight, and days filled with despair that things may never change. Through it all, she feels the emotion in the moment and then pulls up her boot straps and gets right back in “the game”. “The game” for Claire is loving on her friends and family, doing the best she can in school, and learning everything she can about her illness and walking that road towards recovery. I know that someday soon Claire will be living a life that is pain free where she can ride horses and do the things she’s missed out on. I know this because I know God does have a plan for Claire and I know that since the day she was born he granted her with the gifts to see her through - overflowing joy and grit that Clint Eastwood would be proud of.'
So well put, Mrs Cole! She echoes the sentiments of all who are close to Claire.
I've had numerous conversations with Claire's mom, Natalie and she has been an encyclopedia of medical information. A medical information savant, if you will. It is obvious she and Claire are very attentive when the specialists are spewing out life-saving information. However, her deep passion and love for her daughter and her family's obvious deep faith shines through in her heartfelt words. Some of which could make anyone cry happy tears. Natalie expressed to me and I quote...
'Claire radiates so much love to other people and that's just who she is. She's the only person I've ever known that never protects her heart. It is always laid out on the table for other people. People need that, Doug. She's lost so much but she is there for everyone. Her unselfishness is right up there with all of her good qualities.'
I'll end this piece with sadness because it means I won't be in contact with Claire and her awesome family every day any more. Claire is my impromptu therapist and you'll never meet more salt of the earth people than the Swanson's.
Come to think of it, I stress that a lot about people in this community. How fortunate we all are to be able to live in this great place!
As for Claire, you just know she'll come out of all this on the winning end because she's nothing short of a winner! This too shall pass.
Someone please teach this young woman how to park a frigging car though. Someone's gonna get hurt.
Perhaps Shawn Mendez is available...
Please click the link here to learn more about Claire's treatment, her heroic specialists, MCD, MCAS, MALS, POTS, Dysautonomia, etc...
If you feel you may be experiencing symptoms for any of the diseases in this article, here is a list of specialists. You may also contact the Swanson's or this writer.
Dr Amer Suleman, Cardiologist in Dallas for a POTS specialist
Dr Anna George, Immunologist in The Woodlands for MCAS
Dr KJ Nagarsheth, Vascular Surgeon in Baltimore for Vascular Compression Syndromes
Dr Grant Chen, Anesthesiologist in Houston for Pain Management with a celiac plexus nerve block
The Swansons email is email@example.com
Doug Sarant: firstname.lastname@example.org