I Started Chemotherapy!

I was told, I need to tell people about what I’m going through in order to feel support and that like everybody I help, I need support too. People know that I have a disease but a lot of the people I’ve met recently don’t quite understand the severity of it because my situation changed.

When I was first diagnosed, my treatment consisted of 8 hour long surgeries every 4 months. In second grade, I tried chemotherapy and it ended with me receiving Last Rites from our priest. In middle school, I had 6-hour surgeries every 6 months and I tried a new chemotherapy. In high school, I either had four-hour long or 8-hour long surgeries every 6 months. In college, I had 4 hour surgeries every 6 months sometimes once a year. The surgeries didn’t get shorter and farther apart because I was getting better but because I was getting harder to treat. It was easier to adapt my lifestyle to these surgeries but fewer options were left with how to treat. I went through these procedures with the idea that eventually I would have a medicine that would do the work of these surgeries. It was promised to eventually exist. Now, I’m in graduate school and my doctor has retired.

A long while ago I wrote in my Microsoft Word equivalent of a diary,

“Sometimes you just have to accept it. There’s no point crying because that’s the way it is. This is what we have to do. People are always saying there might be a drug or there’s a drug trial here we can try and enter but it never pans out. There’s no sense getting hopes up until you are actually holding the drug in front of you.”

Well friends, I’m actually holding the drug in front of me. Well, sort of. I’m holding a drug in front of me and we’re hopeful it’s THE drug.

I started chemotherapy in January and have been taking it everyday since. That’s 267 days. Yikes. We’re still unsure if it’s working. For all purposes I’m stable and I’ve gone a year and half without surgery, which is the longest I’ve gone since being diagnosed.

I’ve been making videos this whole time, trying to document this whole crazy journey. Not all videos are that great, especially the first few but I still thought I’d share these over the next few weeks. If not for you, then for me to look back on and think about. So, here’s the first link. Me telling you all that I’m doing this huge scary thing and the night after I found out this thing was possible.

I Don’t Think You’re Ready for This,

Kelleigh

Kelleigh’s Cross

Annually I make the journey to Michigan to give out The Gustafson Family Catholic Youth Leader Award. Every year I get up, give a speech, and announce the recipients. We decided to hold a luncheon afterwards to honor and catch up with all the past recipients because it was the tenth year of giving out the award. Below is a copy of the speech I gave before announcing the new members of the Kelleigh’s Cross community.

▪️▪️▪️

Thank you Principal Krusky, faculty, staff, STA students, parishioners, and visitors for giving me the opportunity to be here today to present this award. Before I start, I want to apologize for this outfit. I figured it’s May Crowning and if there’s a perfect time to wear a floral pantsuit, it’s today. Anyways, it’s an honor and a privilege to be here and its always great to be back home at STA. I graduated from STA in 2010 and just finished the first year of my masters program at Columbia University. As many of you may know, at age 4 while a preschooler at St Thomas Aquinas, I was diagnosed with a rare, life-threatening and inoperable disease called arteriovenous malformations. Basically, not all of my blood vessels connect properly.

Last year I talked about friendship. More specifically, our friendship with Jesus. I touched on how He is our lifelong friend and is willing to travel any road to find us. More importantly, I know that it isn’t just the presence of Jesus as a friend that guides us but the friendship He gives us through classmates, teachers, and family. This year, I want to expand on an important part of that friendship. Kindness.

There’s a quote I take with me when I join new groups, make new friends, and most recently when I moved to a New York City. It was said by a former First Lady of the United States and it goes,

“Never lose sight of the fact that the most important yardstick of your success will be how you treat other people – your family, friends, and coworkers, and even strangers you meet along the way.”

Your yardstick of success will be how you treat other people.

I always think back to that. I really resonate with it. Attending Columbia has taught me a lot about comparing myself to others. How do I treat others when they succeed? Am I kind? Am I jealous? I started to understand that I don’t always have to be an A+ student. Getting an A doesn’t matter if I ignored friends who needed my help studying. But man, does a solid B feel good when I took the time to help my friends who didn’t understand something.

It reminds me a lot of what I learned at STA. Do unto others as you would have them do unto you. Treat others how you want to be treated. If I was struggling with something, I would like my friend to help me out and I always knew I could count on my STA friends.

I try to follow the motto: “Treat People with Kindness” because I know what it’s like to be treated that way.

This is the tenth anniversary of me giving out this award, so I’ve been thinking about the number 10 a lot, especially with that 10 year challenge thingy that went viral earlier this year. When I was 10, I received a tracheostomy tube. Essentially, it’s a tube in my throat that helped me breath. I lived with it for six years but when I first got it, I hated it. I hated the idea of needing to go back to school with this thing in my neck and looking different. Yet, some of the parents in my 4th grade class went and spoke to my fellow students about what I was going through so that when I returned I would be welcomed back with no questions or weird stares. That’s kindness.

I can remember kindness even before that. Ever since being diagnosed, STA supported my family with love and prayers. That was kindness.

In first grade, when I had a very obvious change to my appearance to help promote new tissue growth on my scalp, STA didn’t treat me any differently. That was kindness.

In 2nd grade when a chemotherapy made me critically ill, I was given nothing but kindness from STA when making my First Communion and returning to school.

As a sophomore in high school I felt STAs kindness across states when I decided to remove my trach. I felt your kindness when I was 20 and suffered a stroke. I feel it every day when you keep me in your prayers. I feel it every year when you hold your dress down day for Kelleigh’s Cause. And most recently, I felt it this past Christmas when I received letters from Ms. Caruso’s class wishing me a Merry Christmas.

STA has shown me tremendous kindness throughout my entire life and I could only hope to give back as much as I have received.

So, your most important yardstick of success will be how you treat other people. Another way I like to phrase this, is your kindness is your credential. Credential kind of seems like an adult word so let’s say achievement, your kindness is your achievement. What an achievement to be known as kind.

It can be hard, sometimes we don’t always want to be kind because maybe someone wasn’t kind to us. I get that, I call my mom all the time to talk about it. We usually discuss what I know I should do but that it’s hard for me to just decide to do it. Usually it’s about whether or not I should watch my sisters cat. I know the kind thing to do would be to help her out. So I do.

For anyone who likes superheroes I usually think “What would Captain America do?” but more importantly “What would Jesus do?” Both of them would choose kindness… and watch the cat. Her names rhubarb by the way, just like the pie.

As I look around the church, I can see the kindness in all of you. You’re already being kind when you help your parents, when you make friends, when you ask someone how they are doing. I see it in your smiles, in your friendships, and the way you share your Catholic faith.

I feel this award embodies that kindness. At STA, I learned compassion, resilience, and what being a Catholic meant and it means being kind. I learned all this from my fellow students and the students couldn’t have done it without the support and kindness of the STA teachers, faculty, and staff. They showed through their actions what it meant to love someone and be their friend. What it meant to show someone kindness, just like Jesus.

This award is meant to celebrate young men and young women from the 5th grade, selected annually by the teachers and STA Administration who represent a quiet yet strong Catholic Leadership. They are walking besides their classmates, sharing their kindness with them, and walking a journey of Faith together. As they finish the 5th grade and move on to the middle school it is our hope that they will understand that this award was established with my family’s profound gratitude and love and that they will wear their Celtic Cross with pride, continuing the legacy of those who have done so before them. They will continue to embody the friendship Jesus has with us and spread kindness throughout the school.

 

Complications: Why I Received a Tracheostomy Tube

Seven years ago today I got my tracheostomy tube removed. I worried for months about even asking about when it could be removed that when they said it was a possibility I couldn’t believe it. Then I had the fear for even taking it out and finally worked up the courage to just do it. For those first few days after it was removed I was so worried they would put it right back in. It’s still something I worry about because I hated that thing. I had that trach for 6 years and then lived with a band-aid on my neck for a year afterwards until it completely closed.

This day means a lot to me because this trach changed me in a lot of ways and was the first moment of reality for me. I always knew these treatments were necessary but it was the first time I realized as a kid that they were dangerous.

For those of you who don’t know, a tracheostomy, or as I shorten it a “trach” is a surgically created hole in your windpipe which is kept open with a tube. This device allows air to flow when the usual breathing route is obstructed or damaged. I had a trach for six years and they were probably the most insecure years of my life because I did not want a trach. This is probably something I cannot reiterate enough. I go with the flow for a lot of medical procedures and especially up to this point in my treatment, but I absolutely refused this trach.

Let’s set the tone.

It was the summer between 3rd and 4th grade. My AVMs were moving and being more active than normal in my neck. This isn’t unheard of, it’s often why I receive treatment in the first place. Our goal is to always keep the AVMs from spreading even if it does seem impossible. My mom was concerned because she saw me backing off of a lot of the activities that I enjoyed. My mom says when she asked me why I no longer wanted to do these things, I told her that my neck felt full. There’s always been constant emails back and forth with my doctor so my mom informed her about it. They decided I should have another procedure to try and control the AVMs around my airway. For timeline purposes, this procedure was scheduled in December.

So, I received surgery and ended up being on a ventilator after because my airway was swollen. We knew before the surgery that I would be put on a ventilator for a short time afterwards just due to the nature of surgery. The procedure went well and I was admitted to the Pediatric ICU (PICU) to begin my recovery. This was also pretty normal for me, at least for the first day or so, but I guess it was never normal for my parents. I spent the next five day sedated and on the ventilator. Yet, on the 6th day I was able to be taken off and move to the regular pediatric floor.

Anyways, that was not a fun recovery because my throat hurt, especially whenever I ate and I’m a known foodie. After spending 5 more days in the hospital I was discharged home and continued my recovery and slowly started getting back into my own routine. This also meant starting my usual steroid taper. This was the usual tone. Symptoms arise. Surgery is done. Everything’s good for a few months.

But then it all started again. I stopped wanting to go to practice for whichever sports season it was. I backed away from all my regular after school activities because my throat started to feel full again. My mom began to notice that once my steroid taper reached a certain point I would make whistling noises when I breathed (I guess there’s actually a term for this and it’s stridor).

All of the local doctors were baffled (which is something that I’m feeling like was becoming a theme) and increased the steroid dose. Once back on higher steroids, the fullness and noises I made while breathing would go away. Then they would wean me off and it would all come back again. We played this game over and over and over again. Nobody knew what was going on. It was all a complete mystery and guessing game for how to solve it.

I was nine.

This went on for about three months.

Eventually it was decided that I couldn’t be weaned off steroids and the amount of doctors’ appointments increased. All of them were confused. I guess this just isn’t something that happens. It didn’t make sense.people with my symptoms don’t see them resolved with steroids. However, numerous appointments and a scope of my larynx and pharynx determined that my vocal cords weren’t moving.

I guess that’s like a real super bad thing, and everyone was surprised. I was still talking fine even though my vocal cords weren’t moving which I guess is unheard of too. Just some more mysteries. After a night in a different hospital and another round of steroids to keep my airway safe, it was decided that I very well may need a trach since without the constant high dose steroids my airway was dangerously unsafe.

So, I got shipped out to my usual treatment location, 12 hours away, in order for them to witness the phenomenon that were my vocal cords and try to wean me off steroids one last time. I can count on my hand the number of times I’ve gone against medical advice and leaving for this trip was the worst thing I could possibly think of. Underneath it all I knew this is what needed to happen. I knew I needed but my god I did not want it. I didn’t care how dangerous my airway was, I was not willing to live with a trach. But alas, I was only nine and making medical decisions that young was not allowed. So we left for my usual hospital in Boston.

I ended up spending a month there in the hospital, building up the denial that it was going to happen. But I’ll delve into that for the second half of this story.

What It’s Like: Blood Draw

Getting your blood drawn can come off as something quite frightening. I mean, someone is taking your blood out of you while you’re awake and watching. It’s quite weird to think about. In some way it’s like a vampire who has some serious self-control. In reality though, it’s nothing to worry about it. The people drawing your blood, officially called phlebotomists, are honestly quite skilled. I’ve been thinking about this a lot lately because I’ve been getting weekly blood draws for about two months now. I’ve thought of some questions about it though, like who was the first person to do this and think “hmmm you know what could be medically helpful” or why is it called drawing your blood? I feel like this term means we’re all just taking red crayons and coloring what we feel blood is. Is that what they’re doing once they take the blood out? Are they actually running tests or are they just using it for still life drawings?

So, I conducted some research. According to Wikipedia, the concept of venipuncture, the process of obtaining venous blood intravenously, began sometime in ancient Egypt and ancient Greece. However, it originally started as the therapeutic practice called bloodletting. Back then practioners believed that some illnesses were due to impurities in the blood and these could be resolved by removing blood from the body. It was widely used through the 19th century and was highly recommended by physicians for many illnesses including cancer, diabetes, asthma, tuberculosis, and indigestion. Some people opposed this method and scientifically disproved it yet still millions of leeches were imported each year to continue this practice. In the 20th century the medical community moved away from the practice of bloodletting and began using phlebotomy to test blood samples abnormalities. Today, it’s just as common but far safer. Venipuncture is something most have happen a couple times in their life, but some may not have ever gotten their blood drawn.

For those who don’t know what it’s like, here’s my take on the whole process:

The Process.

  1. Check in and wait. This is where you scope out the competition. Size up who else is in there with you and it’s the time for me to make guesses as to why each person is in there.
  2. Sit in a chair that you’ve never seen before. I mean I guess it’s practically designed but it’s like an uncomfortable height chair. Sometimes it’s just a regular old chair and you think yeah okay, let’s see how you pull this one off.
  3. A tourniquet is tied around your arm. Which sounds scarier than it really is. This is simply to help your veins show and it only feels like someone is pinching you. Sometimes, it honestly feels cosmetic and serving no true purpose.
  4. The prep. This is where the phlebotomist gets all their supplies so that everything they might need is within reach. This is actually very important to me. It’s the point where I decide if I like this phlebotomist or not. It’s also the time where I know if this is going to feel like a soft pinch or an aggressive pinch.
  5. They clean your arm with an alcohol wipe and go in for the vein.
  6. You just kind of wait there for them to be done. I personally, like to watch. It freaks me out to not know what they’re doing, and I don’t like to be surprised by the pinching feeling of the needle.
  7. They pull out the needle, give you some gauze, and slap a band aid on your badass arm. I’m calling it badass because it basically just survived a minor stabbing without even flinching.

In all actuality it takes maybe a minute but for some it can be a really scary minute.

I don’t remember ever being scared, just that it was always something I had to do but I’m sure my mom could tell you otherwise, especially in my youngest years. I’ve become so accustomed to it, I don’t even care anymore. I used to put in an effort as to which arm to use but now, I let the phlebotomist choose. I also don’t like to make decisions so it’s nice when someone else does. My vein has been poked so many times already, I sometimes wonder about its stability as a vein.

I’ve had my blood drawn at least 10 times a year for my entire life. So, I’ve developed some strong opinions on the act of blood drawing. Like, “no I don’t have an arm preference, but each arm has a beautiful median cubital vein for you to use.” or “yes, actually I prefer watching, yeah no my own blood doesn’t worry me”. Furthermore, you know how in step four I said this is where I decide if I like the phlebotomist. It’s because at that stage they choose a needle and obviously butterfly needles are way better than anything else. I’m technically an adult and I guess butterfly needles are meant for children but trust me they hurt less and look less aggressive coming towards you no matter what age you are. It should be a rule that phlebotomists can only ever use butterfly needles. It should be standard protocol. Also, better to chat while it’s happening so that you’re both not just awkwardly sitting there for a bit watching the phlebotomist go full vampire on your arm. Lastly, decorated band aids are way better than the usual brown ones. This may seem like nothing, but to me it’s much more exciting to walk around with fun band aids later. I don’t care if a SpongeBob band aid isn’t work appropriate, its way more exciting. Oh, and fasting is the worst.

I noticed I always thank my phlebotomist, as if this wasn’t their job and I’m incredibly grateful they decided to grace me with their presence. But I mean I am in a lot of ways grateful. Venipuncture takes skill and even more skill to do it in the least painful way possible. I’ve definitely had some bad experiences with people drawing my blood. They’ve missed veins completely, couldn’t find veins, or gave me band aids that my skin did not approve of later. So, it’s nice when you find a place that makes it relatively easy, quick, and painless.

I was thinking about this when the woman who’s been drawing my blood lately told me she was glad to see me because she’s had crying babies all morning. I promised her I would try not to cry. She promptly took a few tubes and gave me a rainbow pony band aid. I’ve loved getting my blood drawn lately because it’s been the perfect setting. My phlebotomist is lovely, she always uses butterfly needles, I get fun band aids, and it barely even hurts. My right arm might be a little tired of the constant miniature stabbings, but it’s been a good experience overall.

 

Life with a Disease – A Mother’s Perspective

Ahhh I’m so happy my mother said yes when I asked her to write a post for Rare Disease Day! So here it is, the words below are my mother explaining what it was like to have a child with a rare disease!

I will never forget the day in September of 2000 when I wastold, your 4 year old daughter has a “rare, life-threatening and inoperabledisease for which there is no cure.” These words are forever etched in my brain and are always on mymind.  No parent wants to ever hear thesewords.  What do you do, how are you evergoing to handle this?  She is four andshe has no idea and we can’t fix this. How do we tell our other children, what does this mean for them?

To this day, those words – rare, life-threatening andinoperable – directly impact every single decision we make.  These last 18 years have been filled with multiplespecialist appointments, emergency room visits, hospitalizations, ICU stays, numeroussurgeries-actually too numerous to count, life threatening reactions tomedication trials, life threatening infections, a tracheostomy and so so much more.

You can never let your guard down because one phone call canchange everything.  You have to watch thesymptoms, do they mean something or is it just another part of the disease andthis is the new normal?

“No it’s not Cancer, but…” as you describe this disease toyet another medical person who has never heard of it or calls it something itis not.  You are now an educator and anadvocate.

Can you leave her with a babysitter, can she roughhouse withher brothers and sister?  Does she haveher medic alert bracelet, does everyone who comes in contact with her need toknow, should they know, when do you tell them?… You don’t want to scare themaway, you want her life to be as normal as possible, you don’t want this todefine her…but you have to keep her safe.

 When friends ask howshe is, do you tell them the truth or do you say she is doing well?  What does she want you to tell them? 

You always have to have a plan.  Can Dan and I both be out of state at thesame time, what’s the plan if there is an emergency?  What happens if something happens to Dan orme?  Which of our older children willnavigate this journey with her?

Through all of this we have learned that there are morequestions than answers.  We have reliedon our Faith and our support system of friends and family.  We have chosen not to sit back and wait; wehave chosen to do everything in our power to make sure that Kelleigh receivesthe very best medical care.  We have beenblessed by a brilliant, compassionate and dedicated medical team and we havechosen to advocate for awareness and research. We have empowered Kelleigh from a very young age to share her story inorder to help others.  And we won’t stop!  This is how we cope.  This is how our older children cope.  This is our family’s response…our Faith, ourFamily and Service.  We didn’t choosethis devastating rare disease diagnosis but we acknowledge that it impactsevery part of each our lives every single minute of every single day.  Because of this we support Kelleigh, we watchout for each other and we commit our lives to helping everyone who is impactedby AVMS.

Bridging Health and Social Care

It’s February 28th meaning, it’s Rare Disease Day. This day was started 11 years ago to raise awareness for over 6,000 rare diseases and how they impact patients’ lives. This campaign targets the general public, policy makers, health professionals, and … Continue reading

Complications: 18th Birthday Parties

Here’s an everyday life story. I have three older siblings, making me the youngest of 4. This story takes place on my brothers 18th birthday making me 10 years old.

18 is a pretty big birthday number so we threw a party in our basement. The party was going well with all the parents upstairs. We were playing Rock Band and pulling out all the tricks. It was a full on show. We had strobe lights, a fog machine, and a crowd. During one of the more head banging tunes my brothers friend tripped and my head was the lucky recipient of his elbow. I went down and laughed off these crazy antics until I felt something went. By the age of 10, I knew that wasn’t a good sign. I quickly, for lack of a better term, sobered up, held a hand to my head, and ran upstairs.

I remember tilting my head thinking maybe that’ll help keep the blood on my me and off the walls… I was sadly very mistaken. I made it upstairs, in an already blood drenched shirt and my mother gave me a rag to apply pressure as she called an ambulance. Due to my disease being artery based, the blood was everywhere. My attempts to minimize it, did not help in the slightest. It covered the walls, cabinets, and unfortunately the guy who elbowed me. A quick arrival of the ambulance, because we were an Enhanced 911 house, and a short ride to the hospital later. I had a millimeter size cut and I bled like you had hit my aorta. It was a wild time.

They couldn’t stop it from bleeding so they just put surgical glue on it. By the end of the night, I had a glue mound on my head but hey the bleeding finally stopped. A few days later the doctors realized they couldn’t just take the glue off because I would start bleeding all over again. Not nearly as bad as before, but still. So I had to have surgery to remove the glue blob and give me disposable stitches. However, when I was under, each time they tried to do a stitch I would bleed. Eventually, after the procedure was already longer than necessary, I had my stitches.

I have quite a few stories about bleeding complications because its a huge risk factor and symptom of AVMs. Yet, I find it amazing that i’ve never needed a blood transfusion.