How Parents with Disabilities Can Start Flexible Side Gigs and Thrive

 

This is a guest post by Hannah Simpson

For parents with disabilities juggling caregiving, energy limits, pain, or unpredictable symptoms, traditional jobs can feel built for someone else. Disability employment challenges like rigid schedules, transportation hurdles, inaccessible workplaces, and gaps in accommodations make “just get a job” advice land hard. That’s why side gig opportunities and realistic work from home options matter: they can fit around medical needs and family routines while still bringing in steady money. With the right expectations and a clear understanding of the basics, flexible income can support financial independence for disabled parents.

What a Side Gig Really Is (and What to Know First)

A side gig is paid work you do outside a traditional job, often in small, repeatable chunks. It can be remote, local, project-based, or ongoing, and you control how much you take on. It also helps to know you are not alone: many working Americans earn extra income this way.

For disabled parents, flexibility is not a perk, it is access. A few income streams can reduce the stress of one job falling apart after a flare day or a school closure. Before you start, get clear on basics like accommodations, how you will track income and expenses for taxes, and any benefit rules that apply.

Think of it like building a sturdy workbench. You measure first, choose the right tools, and plan for safety, so the project does not wobble later. With the basics set, simple planning and budgeting skills make growth feel far more predictable.

Build Business Know-How That Makes Side Gigs Stick

Once you know what counts as a side gig, the next win is setting yourself up with the know-how to keep it steady. One practical way to boost your business acumen is earning an online business degree, which can help you make smarter choices and grow with fewer surprises.

A business degree can build skills in accounting, business, communications, or management, tools that translate directly to pricing, tracking money, talking with clients, and running day-to-day tasks with confidence. If you want a structured path, business fundamentals degree options, such as the one linked, can help you learn those core skills in one place. And because online degree programs are built for flexibility, it’s often easier to work full-time while keeping up with your studies.

Side Gigs That Work Well for Disabled Parents

The best accessible gig ideas aren’t the ones that look impressive on paper, they’re the ones that fit your real week. Pick skills-based side jobs you can deliver consistently, then use the simple planning and budgeting habits you’ve been building to keep it sustainable.

1. Online tutoring (your schedule, your subject): Start with one subject you can teach confidently and one age group you enjoy. Because online tutoring removes geographic limitations, you can work with learners beyond your local area, which is huge if transportation or stamina is a factor. To make it doable, offer two “office hour” windows per week (like Tue/Thu 7–9 pm) and a 30-minute trial session script.
2. Freelance writing (repeatable pieces, not endless custom work): Choose one lane, blog posts, emails, product descriptions, or accessibility-friendly content, and build 2–3 writing samples in that style. Make your business plan extra simple: decide your monthly income target, then back into the number of articles you need to deliver. A practical starter system is “outline day + drafting day + editing day,” so you’re not forcing all your energy into one long session.
3. Virtual assistant services (a menu of tasks you can actually do): Write a list of tasks that match your strengths, email sorting, calendar scheduling, spreadsheet cleanup, document formatting, customer replies, or simple research. Package them into a mini “service menu” with clear limits (example: “up to 5 hours/week” or “responses within 24 hours on weekdays”). This is where basic budgeting helps: set aside time for admin (invoicing, check-ins) so the gig doesn’t eat your family time.
4. Sell crafts and handmade products (batch work + small runs): If you already craft, turn it into a small, repeatable product line instead of one-off custom orders. Make 5–10 of one item at a time, track your material costs, and price so you’re paid for your labor, not just supplies. A simple plan: one making day, one photo/listing day, and one packing day per week.
5. Digital products (create once, sell many): Turn what you already know into templates, checklists, planners, or short guides. Start tiny: one printable or one template that solves a clear problem (meal planning, IEP meeting notes, medication tracking, chore charts). Use your business fundamentals here, write a one-paragraph “who it’s for + what it fixes” description before you build anything.
6. Remote customer support (scripts and steady hours): If you like structure, this can be a good fit, especially if you prefer clear expectations and repeatable work. Look for roles with set shifts and written scripts, then protect your energy by choosing predictable hours (example: three 4-hour blocks weekly). Track what you earn vs. the time cost so you can decide if it’s a “keep” or “quit” gig after 30 days.
7. Transcription/captioning (focused work in short sprints): This is detail-oriented work that can be done in 20–45 minute chunks, great if you manage pain, fatigue, or attention limits. Set up a quiet workspace, test your accuracy on a short sample, and create a pacing rule (like “two sprints, then a break”). It’s also a nice way to build a predictable weekly baseline income.
8. Bookkeeping and invoicing help (systems for people who hate systems): If you’re comfortable with spreadsheets and routine, offer basic bookkeeping support: organizing receipts, reconciling simple records, creating invoices, and tracking due dates. Keep it beginner-friendly and narrow, one or two repeatable packages, so you don’t accidentally become someone’s full finance department. Clear boundaries and a written scope protect both you and the client.

Side Gig FAQs for Disabled Parents

Q: What are realistic places to find flexible side gigs online?
A: Start with platforms that match your work style: tutoring marketplaces, freelance job boards, and remote customer support listings. Then add community-based leads like local parent groups, school newsletters, and disability networks where people hire based on trust. Keep your search focused by using one job title and one hourly range for two weeks.

Q: How do I handle taxes when I’m freelancing part-time?
A: Assume you will need to set aside money for taxes, even if it’s “just a small gig.” Track income and expenses weekly in a simple spreadsheet and save receipts in one folder. If your income becomes steady, consider quarterly estimated payments and ask a tax pro one targeted question rather than paying for a full consultation.

Q: Should I be a sole proprietor, LLC, or something else?
A: Many people start as a sole proprietor because it’s simple, then switch if risk or income grows. If you’re hearing terms like incorporation, remember that turning your business into a limited company is one formal option, not a requirement on day one. Pick the simplest structure that lets you invoice confidently.

Q: What contract details protect me from scope creep and burnout?
A: Your contract should spell out what you’re doing, what you’re not doing, and when revisions stop. The scope of work is the piece that keeps “quick favors” from turning into endless unpaid extras. Add communication hours and a clear payment schedule so your health and family time stay protected.

Q: Can I market my side gig without spending money or constant posting?
A: Yes. Start with one clear offer, one short sample, and one place to send people, even a simple page or PDF. Do tiny outreach: message five warm contacts, ask for one referral, and post one helpful tip weekly that answers a common question.

Q: What disability workplace rights matter if I take remote employee work?
A: If you need adjustments to do your job, a practical first step is to request a reasonable accommodation through your employer’s process. Be specific about what helps you perform, like flexible scheduling, written instructions, or assistive tech. Keep documentation of requests and responses in one folder.

Build Your First Flexible Side Gig, One Small Weekday Step

When parenting, pain, appointments, and paperwork all collide, starting a side gig can feel like one more impossible thing to manage. The way through is the DIY business startup mindset: keep it simple, start tiny, and build systems that respect real energy limits, this is empowerment through entrepreneurship, not hustle. That approach builds confidence in side gigs because progress shows up as proof, not pressure. Start small, stay consistent, and let your skills pay you back.

Hannah Simpson is a stay-at-home mom of two with a passion for DIY crafts. She thinks being “a maker” is a great hobby for parents and kids alike, allowing them to explore different mediums, spend a little or a lot of time on their pursuit, take time to focus just on what they’re making, and create something unique that makes the world a little more beautiful. As someone who uses a wheelchair, Hannah also finds DIY crafting empowering. By making accommodations based on her needs, she can show her kids that their mom can tackle any DIY project that other moms and dads can. She hopes her new website, Able Crafty, will inspire everyone who visits to make something that brings them joy no matter their age or abilities.

How Parents Can Manage Anxiety to Support Their Children with Rare Diseases

 

This is a guest post by Katie Conroy

Parents of children with rare diseases carry a unique, constant pressure: staying medically vigilant while trying to keep family life steady. Parental anxiety can slip into daily routines through tone, urgency, and reassurance-seeking, even when parents work hard to hide it. Over time, that stress can shape children’s well-being, affecting how safe they feel in their bodies, how they interpret symptoms, and how they handle uncertainty. The goal isn’t to erase worry or blame parents for having it, but to notice the impact of anxiety on children and respond in ways that support managing anxiety in families.

Use a Two-Part Check-In: Spot Anxiety in You and Your Child

Anxiety can become “contagious” in a family, especially when rare disease care keeps everyone on alert. A quick two-part check-in helps you notice what’s happening without guilt and choose a calmer response in the moment.

1. Do a 30-second body scan for parent anxiety: Look for signs of anxiety in parents such as a tight chest, jaw clenching, racing thoughts, irritability, snapping, or urgency to “fix it right now.” Name it simply, “I’m in alarm mode”, because labeling emotions increases emotional awareness and creates a small pause before you react. If your shoulders are up by your ears or you’re talking fast, assume your child can feel that intensity, even if you haven’t said a word.
2. Run a child-focused scan: body, behavior, and sleep: Anxiety symptoms in children often show up as stomachaches/headaches, clinginess, reassurance-seeking, avoidance of meds/procedures, tearfulness, or sudden anger. Sleep changes and increased worry questions are common early clues; if anxiety is already in the room, it helps to remember how common it is, 1 in 12 children ages 3–17 in the U.S. have anxiety. Treat the scan like information-gathering, not a diagnosis: “What’s their signal right now?”
3. Separate facts from predictions (out loud): Rare disease stress makes the brain jump from “today’s symptom” to “worst-case future.” Try a two-line script: “The fact is ____. My worry story is ____.” This protects your child’s well-being by reducing scary forecasts in front of them and keeps parent-child anxiety dynamics from escalating into a spiral of reassurance and panic.
4. Use a 60–90 second downshift before you problem-solve: When you notice your own anxiety rising, do a quick physiological reset: exhale longer than you inhale for 6 breaths, drop your shoulders, and unclench your hands. Then lower stimulation, soften your voice, slow your words, and reduce rapid-fire questions. This works because kids take cues from your nervous system; your calm body becomes a cue of safety.
5. Validate, then offer two choices to restore control: Start with: “This is hard. I’m here.” Then give two small, real options: “Do you want to hold my hand or squeeze the pillow?” “Do you want medicine with water or juice?” Choices reduce anxiety by giving a sense of agency without pretending the situation is optional.
6. End with a 2-minute reconnect and a tiny plan: After the moment passes, repair quickly: “I got tense earlier, I’m practicing staying steady.” Ask one question that builds awareness: “Where did you feel the worry in your body?” Then pick one micro-step you can repeat later, one breath pattern, one phrase, one calming activity, so your family has a reliable reset when stress spikes.

Build a 10-Minute Self-Care Mini-Plan That Actually Fits

Once you’ve spotted how anxiety shows up for you and your child, the next step is protecting your baseline with small, repeatable self-care. Self-care doesn’t have to be elaborate to help regulate anxiety, it just needs to happen consistently. Make time for exercise in ways that fit real caregiving and workdays: take the stairs instead of the elevator, or use part of your lunch break for a short walk. Many parents find that simple healthier lifestyle choices are easier to maintain than big overhauls, especially during intense weeks.

Daily Calm-Builder Habits for Rare-Disease Parenting

When your child’s health feels uncertain, routines are what make steadiness possible. These habits lower your reactivity, model coping, and give your family a simple plan you can return to on hard days.

Two-Minute Body Reset

●     What it is: Do a five-minute breathing exercise or shorter, focusing on slow exhales.

●     How often: Daily, especially before appointments.

●     Why it helps: It signals safety to your nervous system and softens anxious spirals.

Trigger Notes Together

●     What it is: Help your child identify triggers and name body clues and feelings.

●     How often: Weekly, plus after big flare-ups.

●     Why it helps: It turns overwhelm into patterns you can prepare for.

Worry Window and Close

●     What it is: Set a 10-minute timer to write worries, then stop.

●     How often: Daily or 3 times weekly.

●     Why it helps: It contains rumination so it does not run the day.

One Clear Next Step

●     What it is: Choose one action you can finish today and do it first.

●     How often: Daily.

●     Why it helps: Small wins rebuild control when symptoms and tests feel unpredictable.

Connection Check-In

●     What it is: Ask “What was hard?” and “What helped?” at bedtime.

●     How often: Daily.

●     Why it helps: Your child feels seen, and you learn what support works.

Common Questions Parents Ask About Anxiety and Care

Q: What counts as parental anxiety when your child is medically complex?
A: It can be constant “what if” thinking, irritability, trouble sleeping, or feeling keyed up before labs and calls. Many parents assume it only “counts” if there are panic attacks, but worries and fears can be anxiety too. Naming it helps you respond rather than push through on autopilot.

Q: How does my anxiety affect my child if I never say it out loud?
A: Kids often notice tone, pace, and tension even when adults stay quiet. Research following families found parental anxiety predicted child anxiety, which is a good reason to practice small calming skills early. A practical step is to slow your voice and body for 30 seconds before answering questions.

Q: Why is it so hard to manage anxiety when appointments never stop?
A: Chronic uncertainty keeps your nervous system on alert, so “relaxing” can feel impossible. Aim for regulation, not perfection: choose one repeatable micro-skill you can do in waiting rooms and parking lots.

Q: When should we consider mental health support as a family?
A: Consider it if worry is disrupting sleep, relationships, decision-making, or your child’s sense of safety. Therapy can also help when you disagree about risk, treatment choices, or how much information to share.

Q: Can I care well for my child and still need help myself?
A: Yes, needing support is a sign you are carrying something heavy, not failing. Start by telling one trusted person what would genuinely help this week, like a ride, a meal, or sitting with you during a phone call.

Sustaining Calm So Your Child’s Care Stays Steady

Rare disease parenting often means living with uncertainty while trying to stay strong for everyone else, and anxiety can quietly drain focus and energy. The path forward is long-term anxiety management grounded in parental self-awareness, steady support systems for families, and realistic child well-being strategies that can flex with changing needs. Over time, this approach supports sustained mental health, clearer decision-making, and a home environment that feels more predictable even when care is complex. Manage the anxiety, and the whole family’s capacity expands.

Katie Conroy enjoys writing and created AdviceMine where she shares advice from her experiences, education & research. She particularly enjoys writing about lifestyle topics and created the website to share advice she has learned through experience, education and research

Turning age 95 with Familial Adenomatous Polyposis

Carleton Myers turns 95 this June. He has Familial Adenomatous Polyposis and has had an ostomy since about 1948. He has seen a lot in his years and a lot of changes in the management of this rare disease and ostomies. 

Carleton's mother likely had FAP as she died from colon cancer in 1928 at the age of 28. She was adopted so there is no further family history of his mother available. His father lived to be nearly 105 with no history of colon cancer or FAP. Carleton's only sibling, Elmer, was first diagnosed with colon cancer and FAP and Elmer's first son also had FAP and died in his mid 30s. Carleton and his wife, Sheila, 91, have 5 sons who have all tested positive for FAP. Two of their grandchildren also tested positive for FAP.

This is an interview with Carleton conducted by his son, Kevin.

    What were things like when you were growing up with FAP?

    I managed it very well; it was right before I went into the service. I didn't have too much trouble then; it was after that when trouble started. When I learned we could have an operation to take the large intestine out completely, I did that, and it was successful.

    When did you first find out that the operation could be done?

    It would have been probably around 1948. That's when I knew what had to be done because my brother (Elmer) had it done in the early 1940s. He was out in the South Pacific and they sent him back because of it. He had a lot of trouble and hospitals. He managed to survive it. He died when he was 42. Other problems that this brought on, I guess. He had a lot of trouble before it. I didn't, I was fortunate enough to be younger than him and they were learning more and more about it and what they had to do and that saved me.

    How did you find out about Henry Ford Hospital and Dr. Block?

    I went there when Elmer found out that he had cancer. In two months, I went in and had the whole rectum system out because that's where it started growing in my brother. Because he had his intestine out before me. I didn't know which way, but I had good doctors. Just as soon as we found out that my brother had cancer, I had everything taken out.

    You never expected to live into adulthood when you were a teen, is that right?

    I was hopeful about getting into my 40s. That's what I was shooting for, that I could get that far. I got that far, and I kept going. What they did to me originally was taking all of the polyps that were left after they took out most of my large intestine, they left about 6 inches and the rectum. I had to go in many times to get polyps removed. Once Elmer found out he had cancer, I went immediately and found a doctor and had the rectum taken out - it was about three months after that. All of you (my children) were look at in your teens.

    Do you have any recommendations for anyone now that has FAP?

    I don't know what the doctors are doing now. I was just so glad to be living.

    What was it like knowing about FAP?

    Sheila - Scary. I knew it was going to be a battle.

    Carleton - My brother wrote me a letter right away and I immediately got a doctor to do it. My brother raised me because my mother was dead so didn't have much choice. 

Myers Family
Carleton and Sheila in the middle
Their son, Kent, and his wife at top left
Their son, Keith, below Kent on left
Their son, Kevin and wife next to Keith
Their son Kory on bottom left
Their son Kurt on bottom right

Carleton and Sheila 
75th Wedding Anniversary

Carleton passed away at age 96 on 10/16/2022 after viewing the Autumn leaves changing with his son, Kevin, and daughter in law. By all accounts, he died peacefully.

Carleton had an ileostomy and in recent years had surgery for an urostomy as well. He had Diabetes and some difficulty walking without mobility aids but in general was doing well with only rare intestinal blockages and maintained a well intact memory until Sheila's death in June 2022 - afterwards his health began to decline rapidly, per his son, Kevin. 

Michigan started a Familial Adenomatous Polyposis Awareness Week each year during the week of June 16 to honor him. Find out how to help further honor Carelton's legacy and FAP/AFAP patients where you live with the FAP/AFAP Awareness Week Proclamation

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Updated 10/20/2022

FAP and a Feeding Tube: Jeni LeeAnn's Story

This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one. 

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn

That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.

Desmoid Tumors and Esten's Story

Desmoid Tumors, or aggressive fibromatosis, are another rare disease that is common among those with Familial Adenomatous Polyposis (FAP). According to NORD, up to 32% of those with FAP will develop a desmoid tumor due to a mutation on the APC gene, where the FAP mutation is also found. Mutations may also be found on the beta catenin gene that may also cause desmoids to develop.

Desmoids have similarities to cancerous tumors called fibrosarcoma but are benign as they do not spread to other body parts. Desmoids develop in the connective tissues of the body anywhere in the body. Superficial desmoids are typically less aggressive than deep desmoids in the abdominal, extra abdominal or mesenteric areas. Deep desmoids look like dense scar tissue and are difficult to remove as they adhere to surrounding structures and organs. Although desmoids are benign, they can be life threatening due to compression on organs such as intestines, kidneys, lungs, blood vessels and nerves. Repeated irritation or trauma to a certain body area may increase the risk of a desmoid developing. Desmoids may grow slowly or rapidly and at times may even shrink without any treatment. Depending on the size and location, desmoids may have no symptoms or may cause:

• painless swelling or lump
• pain or soreness caused by compressed nerves or muscles
• pain and bowel obstructions
• limping or difficulty using extremities

Diagnosis of a desmoid can only be conclusively made through biopsy but evaluation of the tumor can be completed through ultrasound, CT Scan, and MRI. Desmoids are often closely monitored as a first treatment option due to the varied and unpredictable nature of desmoid growth. Surgery to remove a desmoid is not always the best treatment option as there is a high recurrence rate and there may be a more aggressive recurrence after surgery. Chemotherapy and radiation may be sought but also pose health risks to morbidity and mortality. Anti-inflammatory drugs may cause desmoids to shrink and anti-hormonal medications may help reduce growth in addition to novel molecular-target therapies such as receptor kinase inhibitors. Clinical trials continue to be conducted for new desmoid treatment options.

It is recommended to be evaluated by a doctor and hospital that has expertise in sarcoma. Preferably, the medical team for someone with a desmoid would include medical oncologists, surgical oncologists, radiation oncologists, geneticists and nurses. The Desmoid Tumor Research Foundation has resources and clinical trials for those with desmoids and also may help finding a doctor with expertise in sarcomas in the United States and the Desmoid Foundation of Canada is available for those residing in Canada.

A Desmoid removed from a FAP patient and friend of Jenny's
Measuring 1.234 kg & 25 cm

 Another friend of Jenny's with FAP and Desmoids shared insights she's learned over time stating in her opinion, the most important things to remember for Desmoid care is:

• If possible, don't let anyone excise a lump without knowing what it is first
• Don't let anyone surgically remove a Desmoid unless surgery is life preserving
• See a Sarcoma Oncologist with Desmoid Expertise, preferably a Medical Sarcoma Oncologist versus a Surgical Sarcoma Specialist
• Understand that Desmoids are different for individuals with FAP
• If you have FAP and Desmoids, only have biopsies done of potential Desmoids when necessary and only have surgery, when necessary, as both risk Desmoid creation and/or growth

This is a Guest Post by Esten Gose with Familial Adenomatous Polyposis and a Desmoid Tumor

I was diagnosed with Familial Adenomatous Polyposis/Gardener's Syndrome (FAP) at age 10.  I am the first person in my family to have FAP due to a spontaneous genetic mutation. Around that time, I had a tumor removed from my right jaw. 

Ever since my diagnosis, I have had yearly or bi yearly colonoscopies and endoscopies to keep an eye on my colon and the surrounding area.  In 2004, after my annual scope, my gastroenterologist told my family and I that it was time to remove my colon. We were told that I would likely die if we didn’t.


My parents and I traveled to the Cleveland Clinic in Ohio to have the procedure done there, as at that time, The Cleveland Clinic was a top hospital for treatment of FAP patients. We also chose to have it done there because they were one of the first facilities to perform laparoscopic surgery, and it was done as a “pull through” where the colon is removed and the small intestine Is attached to the rectum.  Having it done that way, we were able to shorten the recovery time from about a week, to about 3 days.

A few days after we returned home to Seattle, I missed a dose of the pain meds I was given to help with my recovery after they surgery. Missing that dose ended up saving my life, as I began having massive abdominal pain, and was take to urgent care. After various tests, I was rushed to the ER via ambulance for emergency surgery. A small hole had developed where the small intestine was fused to my rectum, and I had a massive infection in my abdomen.

That surgery saved my life, and my doctors and nurses told me that when I arrived in the ER, I was in sepsis and no more than an hour from dying. The emergency surgery that was performed gave me a temporary ostomy, with the goal of giving it 6 months to heal and performing a reversal.


During my reversal surgery 6 months later, my surgeon stopped the procedure mid-way through. There was so much scar tissue, that they had to come up with another plan. They decided to give me a permanent ileostomy, which I have now had for almost 16 years.


Recently about 8 years ago, I traveled to the Cleveland Clinic to have a larger desmoid tumor removed from the right side of my abdominal wall just below my rib cage.  My colorectal surgeon was able to safely remove it, and it was sent to the lab to be studied.  This surgery was relatively routine, and I did not have any complications.  I was hospitalized just short of a week and traveled home with no issues other than post-op pain management. This tumor was removed at a good time, as my doctors told me it was pressing on my rib cage, and nearly broke my ribs.


Fast forward to 3 years ago.  I noticed a bump in my abdominal wall and made an appointment to see my doctors at the Seattle Cancer Care Alliance.  Various tests were done, and it was determined the bump I noticed was a Desmoid Tumor.

This type of tumor is usually non-cancerous but can still grow and cause problems.  My oncologist suggested that we treat it with proton radiation therapy, as surgery would be potentially dangerous.  Radiation therapy can more specifically target the tumor, so less surrounding area near the tumor is affected.

Luckily for me, the Seattle Cancer Care Alliance here in my hometown has a Proton Therapy Center just north of Downtown Seattle.  We scheduled an initial appointment there to go over the plan.  The staff there did an initial CT scan to map out the area to be treated, and make sure the exact site was marked.  They put a few ink tattoo dots in specific coordinates so that when I begin my treatment, the staff will know exactly where to position the equipment.


We then scheduled the treatments themselves.  They would be done once daily Monday through Friday for a total of six weeks.  When the day came for my first treatment, I honestly was not nervous at all. The staff there are wonderful and help make you feel very comfortable.

When I arrived at the center for each day’s treatment, I checked in with the staff at the front desk. You are given a bathrobe to use for each treatment visit, so when they take me back, I would change into a hospital gown.  Once the treatment room is ready for you, they bring you from the waiting area. I would lay down on the table. The room has lasers that help the staff position the table in the right coordinates.

Once they are ready, the staff would leave the room to their control room, and shortly after, the gantry above me would begin to move into position, and the treatment would begin.  The treatment itself was 100% painless and would only take 20 minutes or less each day.


My nurses did advise me that beginning about a week into my treatments, the proton radiation would cause my skin to change slightly at the treatment site. It caused my skin to develop wet blisters, which were initially tricky to deal with. Since it was just above my ostomy site, I had to learn to cut my wafer a bit differently so that the skin with the wet blisters from my treatment were able to heal properly.

 Fast forward to six weeks later, and my treatment was competed.  They give you a certificate of completion, and a “Challenge coin” to commemorate your graduation from treatment.  I met with my oncologist after the end of my treatment, and we learned that I would need to schedule an MRI every six months for the next 5 years to check on the tumor that was treated.

As of today, it has been just over 3 years since I finished my treatments, and my oncologist says that the tumor they treated has stopped growing, and even shrunk a bit. I have 2 years left of MRI’s, and then I will just have annual visits instead.

I am extremely grateful to my medical team of doctors and nurses both here in Seattle, and in Cleveland. They have both been incredible participants in my ongoing medical care.

Esten

Esten Gose is a 37-year-old with Familial Adenomatous Polyposis (FAP), born in Seattle, WA and currently living in Snoqualmie, WA with his wife and 2 cats.  He has been married to his wife Jennifer for almost 5 years. He has had his ileostomy for almost 16 years. Esten enjoys sports, traveling with his wife, and spending time with family.

For more detailed information on Proton Radiation Therapy visit:

https://www.sccaprotontherapy.com/proton-therapy. 

This article was updated 3/31/2024 to share the photo and insights from individuals with FAP and Desmoids