As I rest my head tonight I hear the slow restful breathing of my husband and my beautiful 10 year old. Today we swam. Today we had her hair done at the boutique. Today we wore fancy dresses. Today we laughed and hugged and lived. Today was not about challenges that lie imminent. Today was about laughing. Today was about magic. Today was about Meghan. So when the woman waved her “pixie dust” I will confess to fighting back tears. “Bippidi Boppidi Boo! May all of this princess’s wishes come true!” Something so silly – yet with ridiculous deep meaning to us. Love my princess!
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.
There is always hope…
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?”
I could barely contain my laughter, but by then we needed a good laugh.
We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.
I came as usual, armed with a thick heavy binder, a recent MRICD and reports, a list of all current doctors.
I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?
He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.
He took an Xray. Obviously low radiation, (I hope) because no one left the room.
The bone structure is fine.
Shocker!
And he repeated to me that the MRI was fine. (YEP, I know.)
But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.
I gave the beautifully written letter from our PT. It explained everything so clearly.
Pause… Pause… Obvious think time for the doctor.
“I don’t know what to tell you.”
EXCUSE ME?
” I am sorry I wasted your time.”
That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.
So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?
I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.
Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”
I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.
After last night’s late night strep diagnosis, there was no way I could send her to Bible School this morning.
But, I had an appointment with the breast surgeon – a routine follow-up that I knew would take 5 minutes.
(That is why I had scheduled it July 16th when I was ALREADY IN the city- but last-minute doctor vacations are just one of the many inconveniences of life these days.)
I knew it would take 5 minutes – after I drove through an hour and a half of traffic, parked the car, walked a half mile, and waited to be called.
Truth be told it was lest than 5 minutes. A three-minute groping of my silicone implants and surrounding lymph nodes. The proclamation was made that everything looks “great” and I should return in 6 months. I actually was probably dressed and on my way before 5 minutes were up.
But, I HAD to go. It would have been too easy to cancel. It would have been too easy to blow it off. And what if? What if that one renegade cell… Nope, I HAD to go.
And, Meghan had to come with me. She trekked like a trooper to the main hospital to get another copy of the CD of the MRI of her hand for the orthopedist appointment at 2:30. Then, we traveled on the journey to the Clinical Cancer Center. I had to push her in the push chair today. The strep was knocking the wind out of her this morning and the hips and knees were bothering her.
It was also bothering her that people were staring at her. So it was a great opportunity to give her LOTS of really LOUD pep talks. I hope a few people overheard. Some people are really dumb. Others mean well – but for goodness sakes, don’t just stare at the child. Say “hello,” “good morning,” ANYTHING… UGH! But anyway…
And after the 5 minute appointment there was another hour in travel time back home.
Just in time to let the dogs out and run to pick up some chicken breast cold cuts for her to eat before physical therapy.
As she inhaled the chips and chicken I spoke with the therapist. I am always just so impressed by how smart she is, and how much she actually cares about Meghan. She took the time to READ about Cowden’s and to try to understand WHY and HOW the small fatty masses on her palm are affecting her. If only there were more…
Right after therapy it was off to the orthopedist looking for a few answers about the hand and the wrist.
That’s where things unraveled.
Ok. I understand it’s a rare disease. I do.
I get that with an occurrence rate of 1 in 200,000 you may not have touched on it in medical school.
But, you insisted on the paperwork completed online a full 10 days before the appointment. You could have read it, or had someone flag it.
And, I made the appointment with the doctor who had been prepped already.
Bait and switch?
The orthopedist today was amazingly young. I guess the big 4-0 is approaching fast, because I could scarcely believe he was out of medical school. Everyone seems to be looking younger and younger.
No need to remind me of what that implies. I get it.
We have seen LOTS and LOTS and LOTS of doctors. MOST would rather make something up than admit they didn’t know something, which is a problem in and of itself. Not this guy.
He examined her hand. Validated the pain. Looked at the MRI report. Declared there to be “nothing orthopedic” about her problem. And then he said,
“I don’t know ANYTHING about Cowden’s Syndrome, so you’ll have to tell me what it is and what it does.”
I almost asked him to repeat himself, but that would have just been to buy me time for my response. So, as I was gathering my bags and looking to exit as fast as I possibly could, I gave him a brief lesson on Cowden’s Syndrome.
Cowden syndrome is a disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers.
Almost everyone with Cowden syndrome develops hamartomas. These growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but they can also occur in the intestine and other parts of the body. The growth of hamartomas on the skin and mucous membranes typically becomes apparent by a person’s late twenties.
Cowden syndrome is associated with an increased risk of developing several types of cancer, particularly cancers of the breast, a gland in the lower neck called the thyroid, and the lining of the uterus (the endometrium). Other cancers that have been identified in people with Cowden syndrome include colorectal cancer, kidney cancer, and a form of skin cancer called melanoma. Compared with the general population, people with Cowden syndrome develop these cancers at younger ages, often beginning in their thirties or forties. Other diseases of the breast, thyroid, and endometrium are also common in Cowden syndrome. Additional signs and symptoms can include an enlarged head (macrocephaly) and a rare, noncancerous brain tumor called Lhermitte-Duclos disease. A small percentage of affected individuals have delayed development or intellectual disability.
The features of Cowden syndrome overlap with those of another disorder called Bannayan-Riley-Ruvalcaba syndrome. People with Bannayan-Riley-Ruvalcaba syndrome also develop hamartomas and other noncancerous tumors. Both conditions can be caused by mutations in the PTEN gene. Some people with Cowden syndrome have had relatives diagnosed with Bannayan-Riley-Ruvalcaba syndrome, and other individuals have had the characteristic features of both conditions. Based on these similarities, researchers have proposed that Cowden syndrome and Bannayan-Riley-Ruvalcaba syndrome represent a spectrum of overlapping features known as PTEN hamartoma tumor syndrome instead of two distinct conditions.
Some people have some of the characteristic features of Cowden syndrome, particularly the cancers associated with this condition, but do not meet the strict criteria for a diagnosis of Cowden syndrome. These individuals are often described as having Cowden-like syndrome.
Sorry if I got you too excited with the title. It’s really nothing too thrilling. It’s just – there’s more. There is always more.
I held the phone all day in hopes I would get the promised call from the rheumatologist today. Really I should know better. At this point I just want to know if I can raise this child’s medication. But, we will add that to the list of conversations for tomorrow.
Tomorrow – happening in just a few minutes. My how time does fly. And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today. We actually had a case of the giggles.
It started when I called about the car. The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.
Today’s report was that they are “at a standstill.”
WHAT? A work stoppage on my 7 month old car?? REALLY?
But they have to wait for authorization before they can ORDER any more parts.
AND, they are waiting for a “Field Mechanic” to come take a look.
How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,
At least they are on the same page as I am now.
Meghan and I HATE the rental. It smells, It shakes. It’s dusty.
But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.
Funny what can make us laugh.
We know each other really well Meghan and I. We are very “in tune” so to speak. I guess it’s a product of being together so often in so many precarious situations.
So as we walked up to swim practice again tonight she complained of pain in her neck. That was weird.
I touched it – checking for lymph nodes. Nothing obvious.
She swam the first 50 yards and looked weak. The coach motioned for me to come to the deck.
She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.
Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.
I stepped back from that level of determination. The coach agreed to let her swim if I was close by and we both watched.
She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.
Only ten minutes left in practice anyway, reluctantly she agreed.
And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.
That was it. She was talking and then all of a sudden she was telling me she was swallowing nails. She was pale.
It happens that fast. This isn’t so much the Cowden’s but the weak immune system. The IgG subclass deficiencies, the missing mannose binding lectin. From winning her heat, to flat on her butt. That fast.
So we drove home and she showered. We talked about the pros and cons of urgi care at dinner. We had the conversation more for something to talk about. We all knew she had to go.
So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions. He dove right in for the strep test. He dug into her throat and patiently watched for that second line to appear. And finally – close to the 5 minute time frame, he walked over and said to me “here it is.” Faint as anything, but it was there.
“Smart Mom, by tomorrow she would have been a mess.”
I know. I know, It’s that fast and that hard. If I wait – it gets ugly.
That’s the scoop on Strep Throat – from a family that has seen a lot of it. We thought we were rid of it when the tonsils left.
We forgot that Cowden’s patients can regrow their tonsils. So the tonsil tags forming again in the back of her throat are little disease mongers.
The first dose of antibiotic went in around 10. The second one will be tomorrow morning.
Tomorrow she was supposed to be at Bible School. Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.
I hope its quick.
She has PT at 1, and the orthopedist at 2:30.
No rest for the weary. Have to check on that hand.
Generally I try to be a pretty positive person. But really I have to say this is getting a bit ridiculous. I am starting to wonder if I am doing something wrong. I mean everything feels like a project, every situation an issue.
Its no small wonder people sometimes tire of talking to me. I tire of telling tales over and over again. Really, I am not a big fan of drama at all.
And yet, as the precious weeks of summer tick by, and one obstacle after another seems to end up in our path – today I did feel like squeezing some of our lemons in a few people’s eyes.
My constant awareness that it could be worse; my attentiveness to the struggles of others is what keeps me grounded, but it may be even more exhausting. The prayers for young babies, and new mothers, the prayers for families who have lost young loved ones to tragedy, the prayers for the young children who are ill, the prayers for my grandmas – all three of them dealing with their own health issues… and the list goes on. I DO know it’s not just us. But sometimes when it seems to be one lemon after another, I get tired of ducking.
I know the saying about lemons, and an old cliche is good now and again…
But sometimes it just doesn’t cut it.
Sometimes lemons are, well – just sour.
My girl has been complaining of her wrist and hand since June 4th. I remember the date very specifically. And it has been a long 7 weeks. The last few weeks of school she could barely write. We tried braces, no brace, resting, ice, heat. Nothing. The pain gets worse. Then the MRI says normal and I want to spit. (Lemon juice in someone’s eye!) Now we wait while the MRI gets reviewed again, and its time to have a surgeon look at what appear to be soft tissue tumors (at least 2 of them) forming on her hand. One has been there since – forever. The other appears to have grown in size in the last 72 hours. I am not surprised they didn’t show up on the MRI.
This is the same child who took 7 sonograms to have her gall bladder diagnosed with “milk of calcium” and after three “negative” sonograms for the obvious mass growing out of her back years ago – the surgeon decided to trust his instincts and ended up removing a sizable lipoma.
This kid breaks all the rules.
And that’s before we even get to the ramifications of the diagnosis of Raynaud’s Syndrome and its implications made off the MRI. ( I guess that means it was … almost normal?)
So tomorrow I will call an orthopedist to check on insurance issues and to see if they will take a look at this kid. (This one comes HIGHLY reccomended! :-))She certainly can’t start 5th grade unable to write, and this can’t go on forever. So, another doctor it is.
It should be easier to get to the doctor after Enterprise picks me up at 10 tomorrow and sets me up with a rental as my relatively NEW car spends one too many days at the “car doctor” who seem unable to fix the problem either.
This is how long I waited on hold – before I hung up the phone and drove there myself…
All this as we clean out the attic to prepare for the new roof to be installed in a couple of weeks, and we wait for the people to call us back about the class action lawsuit that somehow explains the water damage and dry rot in our bay window.
So if I stay stuck on the lemons I may lose perspective, and God knows I need that to get by. Instead of wishing troubles away I pray for the stamina to continue to endure, and endure. Wouldn’t trade my life for anyone’s. But, God give me strength to find the rainbows – even in the lemons.
And as I organize my paperwork – constantly – tonight I write a check to support “Alex’s Lemonade Stand.” And I pray for all the parents faced with cancer in their children. It strikes fear in my core, so I do whatever little I can- knowing all too well we can all be tossed into places we would never venture to on purpose.
And as I reflect on today, I guess it was a success. We did get into our much underused pool for some mother/daughter time.
And when all is said and done, and I have had a few glasses of cider, and I can sit down and regain my perspective – I have a pretty cool kid. This Cowden’s Syndrome thing – it really sucks. But its such a part of us now, that I can’t imagine giving it up. We are not defined by it, but it is a part of who we have become.
So in the interim, for those of us who by bilateral mastectomy have gone from a size C to an A cup – maybe this is a more appropriate way to view those lemons.
I have been quiet this week. That in and of itself is unlike me.
I am tired – well bordering on downright wiped out.
There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.
Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.
Today she began her summer homework. While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.
There is no camp for Meghan. It is all doctors appointments – all the time. And when it is not her appointments it seems to be mine. She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.
And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.
The geneticist the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist. The spleen survived its next cut – and can live for another 9 months. The 3.5 cm roundish lymphangiomas are stable. That’s all we ask for now. The thyroid lymph nodes – not suspicious enough to biopsy.
The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day. Not this year, but thanks. Good to know the offer stands indefinitely. For now, I have other things to do.
So I have only one more of my appointments lingering, a late July follow up with the breast surgeon. I thought of blowing it off and then realized how dumb that would be – for so many reasons. So, I will go.
But Meghan’s appointments, those are the ones that keep me up at night. Those are the ones that strike fear and anxiety in the core of my soul. My heart beats outside my body in this little girl. I can not sum up in any number of words the depth of my love for her.
So to say this summer, and especially this week has been sheer hell would be the understatement of the century.
Her appointments began the day after school ended. The lengthy thyroid sonogram bought us another 6 months. The pituitary function test was a train wreck, but the call this week claims the results were OK. I want to feel more relieved. But its hard. I am waiting to read the report myself. “Doubting Thomas?” Maybe. Realist – probably. Something is not quite right, but at least its not SO wrong it has to be addressed today.
The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy. In the interim I bought carnitine. Lets see if we can cut that one off.
The vascular surgeon examined the wrist, painful since early June, and the knee. He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year. The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.
Saturday, as I wrote about previously was hell on earth. I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core. I was assured upon exit, that the results would be available to my doctor Monday that passed. Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday. “It’s a complicated read Mrs. Ortega.”
Wednesday morning – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am. They will make it by 3 I was told.
A return call to the surgeon’s office at 4:15. “They just got here, but the doctor is gone – emergencies. He should be able to look at them tomorrow.”
Some time around 4 AM my daughter climbed into bed between my husband and I. She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist. At about 6:15 this morning she nodded off. I tried desperately to find my peace.
And all day today, again, I held my phone. We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.) I refused to be far from my phone. But as minutes became hours, my hope dwindled.
A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk. He has office hours tomorrow.”
Six days.
Unnecessary torture.
Six days.
Wondering, worrying.
Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal. It is real, and it is consistent, and it has gone on too long.
I wish for a lot of things in the world.
I wish for children and their parents not to suffer with illnesses or adversity of any kind.
I wish for relief for those in physical, mental, and emotional anguish.
I wish for peace in the hearts and minds of the caretakers of those who struggle.
But today I also wish something else.
I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions. I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance. I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response. I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.
I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.
Then MAYBE, just MAYBE they will understand our torture.
Bravery – Ready to face and endure pain; showing courage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl. It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known. She faces adversity better than most adults I know. She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path. That would be delusional, and even unfair for a child who has yet to pass her 10th birthday. But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC. We were told to arrive by 8:30 AM for testing at 9. It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30. Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20. As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3. She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot. The medication would arrive at 3. We would have our ultrasound at 2. And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time. But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave. Then we WALKED to 42nd and 7th. Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed. The 25 minute walk each way did more damage to her legs than I could have imagined.
But, we did get to Toys R US. Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.” Ever so fitting in so many ways. I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
The shuttle took us back to MSKCC by 1:30. We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound. Then it was back up to the floor for the test. The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair. Reading, playing with her iPad, watching movies. Uncomfortable. Exhausted. Brave. Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem. But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street. The June 4th injury never healed, and it was finally time to get some answers. The doctors we have seen all have differing opinions. AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many. We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits. So, after two painful sticks to the left, she ended up with the IV on the side of her wrist. And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?” Was answered with “Less than 45 minutes.” It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room. But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube. My hands remained on her ankles, and I could hear the deep breathing. It was just her and Merida inside the tube now. Bravery at its best.
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
And then it was 12:45, and some time after 1:00 we were taken to another room. Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more. This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam. This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right. I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg. No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it? You aren’t going to tell me anything? I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
beatingcowdens 