It never gets easier. No matter how sure I am about how fortunate we are, and no matter how much time I spend praying for those other mothers- the ones who are waiting through surgeries beyond the scope of my emotional grasp, it never gets easier.
Today she walked away alone. Into the operating room without her father or myself. She’s in good hands. I really like the surgeon, and I’m a tough sell. Even having repeated this waiting twelve times before- it never gets easier.
I tried on the way in, to make her feel like it was not such a big deal. That was dumb. It’s a big deal. No matter what. I was trying to make her feel better. It didn’t even make ME feel better.
Because the truth is, we know. We know it could be worse. We are grateful all the time. But that doesn’t mean it’s not important. It doesn’t mean it’s not a big deal, and it doesn’t mean it doesn’t matter. Even if it’s the third one in the last 12 months. Even if it’s the 13th surgery.
Maybe especially if it’s the 3rd one in the last 12 months….
I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.
September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.
So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.
This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.
This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.
This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.
This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.
This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.
I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.
There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.
We help her rest. We feed her the most potent superfoods we can buy…
She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…
And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…
Life is about balance.
September is chaos. It just is.
But the nice thing about September is its followed by October.
And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.
And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.
Since before she could talk we have been working to help this kid become more aware of her body. She can troubleshoot what works for her. She can tell me what foods and medicines help her or hurt her. Every day she becomes more keenly in tune with herself. Its necessary. That is how we keep her healthy.
My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions. Those are the situations where doctors might miss something- even if they are trying. Those poor children might suffer needlessly if no one can determine the source of their discomfort.
But not Meghan. If you will listen. She will tell you. If you pay attention. You will understand.
If she hurts- the whole world might know. If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.
That’s it. Plain and simple.
So when she hurt her hand June 4th, I kept waiting for it to get better.
I played tough for a few days, but it still hurt.
Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.
And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon. Each one finding a reason to dismiss her, and this pain that persisted.
Pain doesn’t persist. Not like this. Not with her.
And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated. You never know where those tumors may grow.
But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)
And, Meghan calmly told the vascular surgeon she thought it was an AVM. He said no.
As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.
You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.
“Look at this,” she said to me. “It has its own blood supply. That’s why it stops hurting when she puts pressure on that mass. She is cutting off the blood supply.”
Meghan would smile, knowing she was understood – at least by someone.
“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost mutter to herself.
And I knew if they were BOTH sure, then I was sure they were right.
I emailed her oncologist, and her genetecist. I sent them pictures. “Biopsy those,” I was told in no uncertain terms.
So Dr. Jill wrote a detailed professional letter to a local orthopedist. I am still not sure he understood all the words.
Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered. The MRI report was negative, his Xray was negative, and there was this bump below her middle finger. He sent us away – apologizing for not helping, but convinced there was no need for surgery.
That was the day Meghan coined the phrase “Donkey Butts!” And I couldn’t blame her.
I went right home from that visit and sent a desperate EMail to the oncologist again. This time I asked for a referral.
She is a woman of few words. Her reply was a link, and the words “Go here.”
So, I called and made an appointment. They took our out of network benefits. We got in the day before vacation.
He looked at Meghan. He talked to her. He sent her for more Xrays. They were negative. Then he looked at her hand again. He told her that he knows all about kids and how well they know their bodies. He told us he treats a few boys who grow bone instead of soft tissue tumors. He told her that the boys ALWAYS know where the problems are. She brightened.
Then he drew a very logical picture of the hand, and traced out the main ligament and tendon. He showed the connection from the soft tissue tumor to the painful wrist spot. He let her feel it, and he told her she made sense. She smiled a huge smile.
The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads. Clearly the tumor on her hand was causing trouble. Clearly it had to come out. Exactly what that would mean once he got in there would have to remain to be seen. Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.
Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand. Chronic pain is absolutely exhausting.
Today was the surgery.
We went to a LOVELY outpatient facility on 42nd Street. The place was clean, the reception was smooth and effortless.
The nurses were darling, every one of them.
The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.
The procedure lasted longer than I expected – almost an hour and a half.
I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”
A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!
So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,” and “THANK GOD FOR DR. JILL!”
I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done. I was also instantly tossed into a new level of worry. See, all along they have been insisting the AVM in the knee was an isolated incident. I shouldn’t worry about more cropping up. Well one just cropped up. Game changer.
I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it. Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM. The soft tissue tumor erupted some time later.
While the exact sequence of events doesn’t matter, a few things do.
Meghan and Dr. Jill are really intuitive.
AVMs can take place in multiple spots.
Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.
Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.
I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.
Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.
Most people, even most doctors, understandably, have never heard of it before.
With an occurrence of 1 in 200,000 that is not a surprise.
What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂
We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.
We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.
We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.
He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.
With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.
She almost leaped up and cheered.
August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.
That’s how you know a kid is at her wits end. When surgery is an exciting option.
He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)
He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.
All it takes is someone who “Gets it.”
We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.
She looks fine, why can’t she walk? She must be lazy.
She is complaining again? Attention seeking,
So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.
Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.
I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”
She is my heart and soul, my sunshine. She deserves nothing less.
We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.
And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!
The car isn’t fixed.
We had to take it back to wait for the “Field Tech” to have a look.
Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.
10 days in service and I left with the same broken car, with the same parts as when I dropped it off.
Except that a few “extra” parts were left on my seat and my console.
While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.
We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.
A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.
Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.
Too hopeful? Maybe. But, if I give up hope, where will we end up?
Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…
Which ones do we put in? Which ones do we take out?
The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”