by Sarah | Mar 17, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
The seconds tick by.
Second by second.
Into minute by minute.
Into hour by hour.
Into days.
Into years.
4 years ago we were in the midst of a struggle for a diagnosis. The years of questions evolving from one stubborn cough. Four months later it came down to an unsure “most likely is” but “might not be” diagnosis of Cystic Fibrosis. (read the full story in parts: 1, 2, 3)
Last year in May we got the words from the pulmonologist that made Angel’s diagnosis “Absolute“. Because unless you have Cystic Fibrosis…you don’t get psuedomonas.
Then I got the brilliant idea to have Brandon tested. This spiraled into genetic testing for both Angel and Brandon.
The test results are in.
And still we have no answers.
They both have a defect on the CF gene.
Angel’s is more ‘severe’ than Brandon’s.
In either case the defect found is not a KNOWN strain of CF. It’s not a known defect…it’s on the gene…but it’s never been seen before.
The official word of the pulmonologist…the one we have trusted for 4 years…the words she’s calling it…the words she’s using…I want to have faith in them.
She says that how she reads it is this:
1. Angel has Cystic Fibrosis. As we have said for 4 years. The defect on her gene is not a recognized defect…but it is CF. It’s quite possible that this unusual defect will mean her CF will continue to be a milder version, we just don’t know.
2. Brandon has asthma. While he has a defect on the CF gene, also unrecognized, it seems more like he’s a carrier than an actual CF patient. He is to continue to see the pulm for asthma every six months and that is how we will continue.
3. Both of them need to go to a genetic counselor for a more in-depth appraisal of the results. So we can learn more about what it means for Brandon’s future & having children…so we can look more into the oddity of Angel’s defect.
I want to have faith in these words.
I want to have faith in the pulmonologist that has been with us on this whole confusing journey. That is the top in her field. That has guided us this far with an unwavering conviction in everything she says and does.
My faith is shaken.
Once again I find myself floundering in the unknown.
On a journey that I thought was decided. The path clear. The stopwatch clicked off.
Someone restarted that stopwatch.
The time is ticking away again.
The uncertainty dragging each second out until it feels like a day.
My faith in the doctors faltering.
My faith in the tests fading away.
Back into the murky waters of unsurity.
Is it CF? Or isn’t it?
All I have ever wanted for my children is answers.
One thing I have never received…
Is one 100% without a doubt pure, positive answer.
Not for Riley (we still don’t have a 100% on her, just a ‘likely’). Not for Angel (we thought we had it, but it was ripped away). Not for Brandon (not when he was little & not now).
Why is that so much to ask?
One answer.
I’ve lost faith that I will ever get that.
Just one answer.
Just one.
by Sarah | Mar 17, 2011 | All About Denver
That’s my story and I’m sticking to it.
He really does get it from me.
We got the initial letter and application weeks ago. I said nothing here, I kept it quiet because we didn’t “know” yet. All paperwork was filled out – and so we waited.
Today the email came. I can shout it from the rooftops.
Brandon has made the Junior Honor Society!! He gets inducted into it next week.
After straight A’s first trimester with a 3.8 GPA followed by a 3.7 GPA second trimester.
HONOR SOCIETY.
So proud.
by Sarah | Feb 23, 2011 | All About Denver, All About Kennedy, Crap, Cystic Fibrosis
Answers.
For once.
A doctor that says…
“I know what it is.”
A doctor that says…
“I know what it’s not.”
No more tests.
No more specialists.
Just once.
For the questions to be done.
For five and a half years it’s been a never ending stream.
Never ending questions.
More specialists than can be counted on two hands.
Tests.
Hurry up – get this test done.
Now wait.
Wait.
Wait.
We have results.
But no answers.
More specialists.
More questions.
Retelling the tales over and again.
Just once.
Just once.
I want an answer.
by Sarah | Feb 2, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
For weeks the countdown to the next CF clinic appointment has been on. Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.
While yes, I’ve been in a panic about Brandon’s…
I’ve also been secretly worried about Angel’s. Despite everything, I wondered if it would actually come back positive.
Don’t get me wrong. I know everything we’ve been through. I remember the past three years clearly.
It’s because of that that I’ve been worried.
In case you don’t remember, our Journey to CF (Part 1, Part 2, Part 3) was not a clear, direct path. In fact, it wasn’t until May of 2010 and 1 positive test result that our highly experienced and dedicated, CF specialty, Pulmonary doctor said without a trace of doubt that this was CF.
So, in the back of my mind lingered that bit of doubt. Wondering, worrying what the test would show.
Tomorrow was supposed to be the day.
The city is covered in ice and the appointment has been CANCELED.
When I got the call I asked for the nurse to call me back. “Brandon is freaking out” was my excuse – but in truth, so am I.
They had to run Angel’s test first so they knew what to look for in Brandon’s. So….her results are in – his are NOT (oy).
In short, Angel has CF.
In length, the two defects that create her CF are VERY RARE. She’s a mutant of a gene mutation. She’s…unique. (we always knew that).
We don’t know the full extent of what this means for her. Or if it means anything at all beyond her having it.
We have to meet with the doctor for that.
So we’re back in a holding pattern. Our next scheduled appointment is the 23rd.
We’ll be looking for and hoping for answers for Brandon before then. The CF nurse is keeping an eye out for us. If I don’t hear anything by Wednesday of next week, they haven’t got them in. I’ll call again the following week to see. If they still don’t have anything, the next week will be our appt.
So…all we know now is that our little Angel is a weirdo. Unfortunately, this isn’t really news. (But it is a relief to have genetic confirmation that her strain is unusual, and we haven’t struggled to reach an answer that was false).
by Sarah | Jan 24, 2011 | All About Denver, The Teenager
Time sometimes flies like a bird, sometimes crawls like a snail; but man is happiest when he does not even notice whether it passes swiftly or slowly.
~Ivan Turgeney
Thirteen years ago this minute, as I was in labor, I still thought he was a girl. The ultrasound said girl. Everyone said girl.
My dreams had said boy.
My morning walk to induce labor I had stopped not at the girls clothes rack, but at the tiny little suits, ooh-ing and ahh-ing over the teensy little ties.
After three false labors I was forced to sit in the hotel room my Mom had reserved utnil I “Finally” stopped screwing around and gave birth already. (For the record, Brandon was only 1.5 hours “early” for his due date.) When my contractions were finally 3 minutes apart, my mom called my OB, who then demanded to know why we waited. She, in her dry and sarcastic glory informed him that she wasn’t about to take me in if I wasn’t going to actually have the baby.
And so Brandon made me a parent. With his perfectly round head and surprise appendage that made him decidedly NOT a girl, & made me wonder how in hell I was going to raise a boy.
But he was perfect.
The gorgeous blue of his eyes made me fall in love in an instant.
Everything on time. Every milestone reached at JUST the right moment. Every clothing size changing right at it’s declared time (0-3 months? Gone at three months. 3-6? Gone at six…it was eerie).
He was happy. Smart. Playful. Loving.
He was my world.
He was my mom and dad’s world.
The first born grandchild. The first born great-grandchild.
The star.
Our family grew. It changed.
Not always in the best, most fair ways for him. In truth, sometimes he was forgotten, because he was so ‘perfect’. So easy in comparison. (I hate myself for it, but it is true).
It never made him less loved.
In many ways, being the parent of a tween was infinitely harder than raising the young ones. He isn’t satisfied with easy answers. He sees the world around him in such a different light. He sees things that a younger child wouldn’t. He understands and absorbs everything. Things that I sometimes haven’t the slightest idea how to explain to him, to clarify.
Right now he is struggling, battling against an internal battle I can’t resolve for him.
But in his heart – he is a good kid. He is smart. He is still loving.
He is annoyed with his parents. Embarrassed that his mother wants to (i.e. is going to) get a tattoo – and has forbid her to do so…(*snort* Like she’ll listen). He hates failure. He strives to do his best and no one is harder on him when he fails than himself. Interested in photography. Science. Math. Writing. Cross Country.
He dreams big.
He struggles to fit in.
He is 13.
In so many ways.
He is my baby.
In so many ways – he always will be.
Happy birthday to my oldest, my first born.
13 is a big number. But you’re just getting started.
by Sarah | Jan 17, 2011 | All About Denver, Crap
Proving he’s more like me than maybe he’d like to admit – the boy hates being in limbo.
The unknown.
Unanswered questions.
Like a thousand pound weight they bear down on him.
Turning what was a well-behaved, maturing pre-teen into a sullen, moody, lying, ignoring his homework teenager.
Yes, I’m sure part of it can be attributed to the fact that he IS a teenager now (or will be in a week)…and there’s hormones and all sorts of craziness, and two sisters that garner much of his parents attention.
But it’s also largely the unknown.
He doesn’t fully understand Cystic Fibrosis.
And all of my explanations and answers can’t change that.
He’s scared.
He doesn’t know what it would mean for him.
He can’t figure it out without an answer.
If it comes back negative, relief will sweet through each and every one of us.
If it comes back positive…
It will not be easy.
Not that it was “Easy” for Angel – but she is growing up with CF. It is ‘normal’ for her.
Brandon will have to learn a new ‘normal’.
But he will learn. And be able to deal. And cope.
But that can’t happen without answers.
Getting out of limbo.
Limbo sucks.
(16 days to go…if the results are back in time for that appointment.)
The seconds tick by.
