A Pleasant Exchange

A Pleasant Exchange

Person 1:  Hey! I haven’t seen you in for-EVER! How are you? 

Person 2:  Good!  How about you? What have you been up to?

Person 1:  Hangin’ in there, School starts this week so had to buy the kids new shoes and stuff.  Soccer starts and I need to figure out when I can get to the gym… You know… the usual…. What have you guys been doing? How are your kids?

Person 2:  Not much!  School starts for us tomorrow too and we are all looking forward to a great year. We have a little more shopping to do and then we should be set. Hey, good seeing you! Have a good day!  Talk to you later!

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A Pleasant Exchange You might have with someone who deals with a Rare Genetic Condition

Person 1:  Hey! I haven’t seen you in for-EVER! How are you? 

Person 2:  Good!  How about you? What have you been up to?

Person 1:  Hangin’ in there, School starts this week so had to buy the kids new shoes and stuff.  Soccer starts and I need to figure out when I can get to the gym… You know… the usual…. What have you guys been doing?

Person 2:  We just celebrated Madison’s 2 year anniversary of her sub Q IGg infusion.  We took cake and breakfast taco’s to Schmitt’s office to celebrate and show our appreciation for all they do for us/her.  (Let me tell you, they do A LOT for us) We skyped with her infusion buddy that moved to New York, It was fun! She doesn’t always like getting her infusions.

Today I went shopping for neupogen, hoping to get a better deal.  My specialty pharmacy charges $1211.98 for 4 vials.  I think my Tom Thumb pharmacy is going to be able to get it for me for a little cheaper. They said they might even administer the shot if I draw up the dose. We just upped her does to 2 ml / 2 X a week to see if we can get a more steady state for her neutrophils. Her new hematologist changed her dose last week before he did her bone marrow biopsy.  Madison will have to have a biopsy once a year to monitor for any type of marrow dysplasia.  This doc has a lovely accent so when you hear the words “dysplasia” and “leukemia” it doesn’t sound so bad.

I took Chase to his GI doc (Love his GI Doc!) He is the one that gave us the referral to the new Hematologist. Chase started our day around 5 and was ready to go by 6. He was climbing on the table, pulling out all the CD’s to put in a back pack, and trying to wake up the girls.  Our appointment was at 8, so we left the house at 6:45 to make the 20 minute drive to the office.  We got bagels for the office, stopped at Home Depot to pick up a little something, admired the tools at HD, swung through McD’s for a coffee and arrived at the office at 7:45. We watched the staff come in, looked at the fish tank, and discussed the picture on the wall.  I scheduled the appointment after our trip to Baltimore for the Immunodeficiency Foundation conference where they talked a lot about GI issues and immune deficiency so I wanted Russo to evaluate Chase with PID eyes instead of TTD eyes. We discussed the pros/cons of starting him on IGg replacement therapy and then we both just laughed when we thought about how Chase would sit still unsedated for an hour long infusion.  I guess you can still hang from the chandelier with needles in your legs, right?

And yeah, School starts for us tomorrow too and we are all looking forward to a great year. Have a good day!  Talk to you later!

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Both of these scenarios are conversations that I have had recently. Both are very pleasant but contain very different content. Why are they so different, you ask? Because the people I am talking to are so different. Some people see our life as something to feel sorry for.  They feel “bad” for us and I certainly don’t want to make them feel WORSE by discussing the specifics of our day-to-day. So I give the “socially acceptable” version. I don’t need them thinking that I am a train wreck. And while there are days that I feel like a train wreck, I am no more a train wreck than anybody else (remember, we all got our things!) 

For those that I do share the details of our day to day, I hope that when I tell you we just celebrated 2 years of an infusion that you see the fun and joy that we Coolidge’s can make regardless of the situation. That when I tell you that I am shopping for neupogen, you can hear the appreciation and thanks that I feel for the people that bend over backwards to help us save a little money, and put a little bit of “easy” in our day.  That when I tell you that Chase wakes most days at 5 that you see his love for life and how much fun he has regardless of his location! That when I tell you we went to Baltimore for a conference that you see how determined we are for knowledge so that we can advocate for our kids and their conditions. I am not ever telling you this stuff so you can feel sorry for me. I am just answering the question “What have you guys been doing? & “How are your kids?”

Love and appreciation to everybody that I don't have to be "socially acceptable" for! We couldn't do it with out you! 

"Cool" Reflections of 2012

As I sit here and reflect on the memories of 2012, the recollection that comes to the forefront of my mind is the incredible, intense, almost irresistible urge that I had to… CUS.

I do not mean “C U Soon”; I mean profanity, swearing and cursing.  But I also don’t mean out loud.  The constant swearing was mostly in my head but I will admit that there was a lot of it.  A cursing mantra would play in my head as I ran to take the chef knife, the bleach or the permanent marker out of little Bubba’s hand.  Swear words would fire off (in my head) as Caller ID warned me of a school calling.  Oh, the examples are endless.

For the most part I don’t think that curse words are really necessary.  In email and on Facebook, cussing seems rude and uncalled for.  So while I will not include any examples of the types of cursing that went on in my head, they are implied because sometimes a properly place swear word can sum the situation up perfectly.  

I am not even sure there is one thing that set the cursing tone for 2012; it just seemed to be a constant dribble of one thing after another, after another, after another.  I realize that everybody’s got something.  I know; I do; I really get it.  I am just tired of mine right now. 

 

I am tired of:

•  Weekly blood work
•  Weekly shots
• Shots in bottoms
• Weekly infusions
• Flu
• Pneumonia(s)
• Mystery rashes
• ER visit(s)
• Doctor visits (Love my medical peeps!)
• CT scans
• Bone marrow biopsies
• Antibiotics
• Fungal infections
• Antibiotics that cause fungal infections
• Ridiculous medical bills
• People calling my girls “sir”
• Not being able to have visitors because somebody is always sick
• Afraid to have visitors because somebody might get sick
• Washing machines that flood my house
• Slapping a smile on my face every day because it is what is expected

And I am tired of being right!

I want to be that mom that the doc says (in her head) “Hmmm this mom is off her rocker” and (to my face)”Everything checks out great, see you at your next well-child visit”.  But I am not that mom.  I am the mom that curses in her head because she is right!!!

In all fairness, there were SO many wonderfully, incredible things that happened in 2012 but my inner Alanis Morissette needed to get that "Happy New Year" out.  I will try to keep the cursing down to a minimum both out loud and in my head.

 

 

 

The Coolidge Controlled Chaos Project

A few weeks ago I just let go, I just couldn't hold everything all at once a second longer. The day I let go, I was in my boss's office and everything spilled everywhere. The only thing that I could think to say was "I need a break, can I take a break"? And thankfully she said "yes".  That was when the "Coolidge Controlled Chaos Project" was born.

What is the "Coolidge Controlled Chaos Project" you ask?  Well, it actually is a project that started a few months ago but we didn't know that's what we were doing. The "Coolidge Controlled Chaos Project", also known as "CCCP" (just for my friend Meme) is an attempt at controlling the chaos in our lives instead of Chaos controlling our lives. We can't ever get rid of it but there are probably a few more thing that can be done to help keep it reined in a little better but we just haven't had the time to do it. I have finally figured out, we have to MAKE the time. So I am making some time. 

I am currently taking a 2.5 week leave of absence from work to welcome Chaos into our lives, to love it, to feed it, to nurture it and to make a place for it in our new home. And the count down is on to make it happen!

But like I said, this project didn't start with my LOA, it started when we decided to move to a one story house. Chaos lived in the old house but it was never invited and it would follow Chase around relentlessly!  They would throw things from the 2nd floor playroom. They thought it was fun to play on the stairs and fall down them. And they thought it was hysterical to climb on bookcases, slip on chairs and go to the ER for stitches. So we let go of a little extra space and got ready to sell our house. We hadn't even put the house on the market and we ended up with an offer and then sold it 3 days later with the help of our fabulous relator, Heidi Mansoori, at 5 Star Property.  The move allowed us to take the house element of chaos out of the equation, giving it a smaller area to play.

We kept Chaos a bit confused by going to Bethesda, MD in June for our trip to the National Institutes of Health 2 weeks after we moved. It was one of the best trips I have ever had. I read 2 books and slept more hours in one night than I can even remember. Big shout out to Andy for organizing everything!  It was perfect!  But I still hadn't figured out why it had worked...Chaos can't surprise you when you invite it.

Chaos snuck back up on us once we got back from the NIH.  We found out on that trip that Chase and Madison's neutrophils and white blood cells were bottoming out. We had to go back to the Hematologist for more appointments, more tests and more outrageously expensive blood work bills. And with this issue still unresolved, more waiting.  I hate waiting.  But on a good note, Madison completed her one year anniversary of weekly infusions this summer. Way to go Madison!  We miss you Dmitri!!!



Chaos really took hold of the new house when Andy accepted a job requiring extensive travel. Andy had been on kid duty for the last year and it was time for him to get back in the work game and this was/is the perfect opportunity.  But it meant we needed to add to the team and that was easier said then done... Long story short, Madison's "sweet" disposition had 2 sitters quit in tears in the middle of the day leaving me with Andy traveling and no one to manage the new school schedule. I lasted about 6 weeks before I finally cracked.

So the time is now to welcome Chaos with open arms into our house. I am ready to understand Chaos with it's unique personality and to help guide it into our lives...  Because, Tick-Tock-TIck-Tock....the clock is ticking.


Some of us think holding on makes us strong; but sometimes it is letting go.
Hermann Hesse

Do you have that closet? You know the one, the closet by the front door that instead of hanging up the coats everybody just throws them on the floor. And it’s not just coats, it’s the back pack, the shoes, and the clothes from yesterday that didn’t make it into the dirty clothes hamper.  Maybe this closet is under the stairs with the vacuum and the 3 computer monitors and the box of receipts, and the lost library book that nobody can find because the bag of Goodwill stuff got tossed in there after you missed the pickup date.  

Everybody’s got one (maybe 2?) of these closets, right?  Tell me you do! Most of the time you can close the door of the closet when company comes over and all is good, right? There are, also, certain people that you don’t mind if they peek into that closet because they don’t care that you don’t hang up the coats, you’ve seen their coats too.  I, personally, just don’t like my coats hanging out ALL the time and I still hope that one of the kids doesn’t walk by and decide to just open the door of that closet to expose the mess on the floor.

Having 3 kids with a rare genetic condition can get your closet pretty messy, pretty fast. There are sometimes when you just can’t keep up with the amount of clutter that gets thrown into the closet and it seems like there is never any time to straighten it out.  Well, the last 2-3 weeks, my closet has just gotten way too full and coats are not just spilling onto the floor, they are projectile vomiting out of the closet. My closet isn’t just hurling its mess onto family and friend, I feel like everybody who sees me gets a coat thrown on them. I have no idea if strangers can tell that my TTD closet exploded.

But I get it now…seems like every day I understand a little bit more and today I understand that I will really never be able to CLOSE the closet door completely. There is just always going to be WAY too much stuff in there.  To know me, is to know a person who struggles and champions 3 kids with a rare, incurable condition and that makes my closet explode so I WILL always have a coat or two hanging out.  I need to be ok with that. Thanks to all my fabulous friends, family, and support people who understand me better than I ever will and who simply and kindly hand me a hanger so I can tidy up my TTD closet a little bit at a time.

World Rare Disease Day - 2012

World Rare Disease Day - 2012

January is almost over and I am happy to report that Madison has met her deductible for the year! We will meet our family deductible the 1^st week of February and our out of pocket max should be taken care of sometime in March or April.  And this is just the stuff that I know about. That’s how ya roll when you have 3 kids with a rare genetic condition.

February 29, 2012 is World Rare Disease Day.  The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives.

I am hoping to help raise awareness by being more open about how our RARE condition affects my family.

Trichothiodystrophy, which is also called TTD, is an autosomal recessive disease, characterized by brittle, sulfur-deficient hair and multisystem abnormalities. The hallmark of this condition is the brittle hair that is sparse and easily broken.  It is also associated with Ichthyosis which is dry, scaling skin that may be thickened or very thin. That is what I thought TTD was when I first heard the diagnosis.  I thought the kids would have a little dry skin and cute, short hair.  Well, they do have some dry skin that is maintained with lotion and the kids’ hair is short and super cute thanks to our fabulous hair dresser (if you are in the Dallas area call for her number – she is amazing!).  However, as I live each day, add each new specialist; I find out TTD effect so much more than skin and hair.

TTD is a rare.  Last stat. indicates that there are 112 cases identified world-wide and 19 in the United States (we have 3 of them).  A rare disease is defined as a condition with such a low prevalence in a population that a doctor in a busy general practice would not expect to see more than one case a year.  Again, our doctors see 3 cases… multiple times every year.

You may say we should go to Vegas or play the lottery but the stakes we are playing with are pretty high.  Considering the following statistics, I think I will keep what money I have in my pocket:

·    30% of children with RARE disease will die by their 5^th birthday (3 out of the 3 have made it past this mile-marker.  Chase will be 6 next month)

·    75% of rare diseases affect children. (100% of our kids are affected)

·    These rare conditions are chronic, life threatening and FATAL (We are doing our best to beat this “fatal” statistic)

·    There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment (We treat symptoms and hope for the best)

We recently were referred to a hematologist to evaluate 2 of the 3 kids for immune deficiency.  At this visit we were told that we may be gambling more than we thought.  We were told that Chase has “Lazy T-cells”, that he is an “immunologic time bomb”, and that he should wear a mask when he goes outside to play (Chase is a 5 year old BOY).  We were told that Madison should continue her school at home, that she should wear a mask when she is around people, that there is another IV medication that she can take if her labs drop below a certain level, and that the only way to “fix” her immune systems is to have a transplant (Madison is 9). That news came last week so it is pretty fresh but I guess I am happy that there are a few options before we hit that transplant decision!

When we first got the Trichothiodystrophy diagnosis, I thought it was a condition that affected the skin and hair… a form of Ichthyosis. But TTD is so much more than that.  This TTD is BIG!  I worry every day about doing stuff that most people don’t even think about. I worry about taking the kids to school, having people over, an ear infection that turns out to be MRSA, and a stomach flu that leads to dehydration.  TTD is not a condition that you can put a little lotion on and be done with it; this TTD is determined to educate me on a whole spectrum of body systems from dermatology to hematology and everything in between like audiology, endocrinology, gastroenterology, immunology and ophthalmology.  You know what is really funny; I don’t even have a dermatologist.

Be aware; Care about Rare.

If you want to blog hop to other Rare blogs, follow the below link…

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To get involved: http://globalgenes.org/

Good Riddance 2011!

Dear 2011, I attempted to outreach to you at the beginning of the year to address your aggressive and confrontational attitude toward the Coolidge Clan, January 25th to be exact. I knew early on that there needed to be some additional training/counseling/interventions between the two of us to make our working relationship run a little smoother. I never heard back from you and I guess the lack of communication was answer enough. 

So with the 2012 waiting eagerly in the wings, I am happy to wish you... good riddance. You were difficult, some would say "challenging" but that is too positive a word to describe you.  You were relentless and downright aggressive.  You didn't just affect us; your hostile attitude got Team Coolidge all riled up.

You forever changed me and you brought me to my knees but after a nice lunch, with a dear friend, I recognized that you did not break me. You tried.  You tried really hard and I do not appreciate that type of style.  There are books that address this... just saying.  But YOU. DID. NOT. BREAK. ME!
 I endured all of it. Stuff I can't even remember and the stuff that I can, like: 

• Chase's school schedule
• The decision for Andy to stay at home
• Traveling with Chase
• The weekly Hizentra treatments for Madison (at home and in the office)
• Endoscopies
• Swallow studies
• Funky ear infections
• The new diagnosis that Chase and Madison both have additional immune system issues
• Pulling Madison out of school... again
• Conversations of pulling Chase out of school b/c he is an "immunologic time bomb"
• The need for a Hematologist
• Drew's stomach bug that turned into IV fluids
• The stress of keeping my job while balancing all of these crazy appointments

 I sweep you under the rug, 2011!  I have a few more gray hairs, a few more wrinkles, a few more pounds but I have a bigger, badder, tougher, stronger Team Coolidge that if 2012 doesn't understand that, she is in for a world of hurt!

P.S. 2011, I am done with you - you made me want to cuss...Which should be a country song if anybody would like to write it!

Christmas of Experience!

The Christmas of Experience turned out to be quite the experience!
Sometime between Halloween and Thanksgiving I got fed up with all the "stuff" in our house. It was actually probably long before that but I just didn't realize what it was that was bug'n me. I was tired of the girl's telling me they were "bored", I was tired of the playroom being covered in toys that had been dumped on the floor, and I was tired of the TV being the "default" activity. Once I realized what part of the problem was, operation "Less is More" started. The upstairs was cleared out. Closets were purged, toys were donated and whatever was left over was organized and put away. That's when I decided on a "Christmas of Experience" for the Coolidge clan. Instead of "things" I wanted to get the kids "experiences": horseback riding lessons, rock climbing, tae kwon do, tickets to Peter Pan, stuff like that. No clutter, no mess and maybe even fun!

I was expecting the "Christmas of Experience" to have the most impact on the kids and to start after Christmas was over and the gifts had been opened. I was wrong! The kids were definitely impacted but the most impact was had by me.

Our Christmas was jump started by a VERY' generous family at the church that had heard about the kids and the year they had medically. They knew we could pay the mortgage and that we weren't at risk of having the power turned off, they knew all that. They just wanted to make our Christmas easier. What an overwhelming concept to process. I said 'no" initially to the generouse offer...We are not worthy of this, there are other people who need this more than we do... but when this family walked in our house with boxes of gifts (multiple boxes of gifts!) and their 3 super-nice boys carried in the full size bed that would allow me to sleep with Madison when she is sick instead of Madison sleeping with me downstairs, displacing Andy to the couch for days, sometimes weeks; when this family removed the burden that I didn't even know I had... I had a huge sense of relief. I still am not sure that we deserve this generosity but this "Christmas Experience" made a personal impact!

And if that wasn't enough, the "Christmas Experience" continues. The very next night, we receive a text asking us to "check the front porch". And what do you think is waiting on the front porch but a GIANT bag of presents. These presents weren't just for the kids; these presents had special treats for Andy and me too. These present came from the "elves". So the kids are nice and excited when the next night, a new text indicates to check the porch, this time the bag of wrapped presents (everybody knows that Santa doesn't wrap) are from Santa! Chase can barely contain himself and everybody believes in Santa (I guess Santa DOES wrap); another AMAZING Christmas experience.

In December we had blood work, weekly infusions, IV fluid replacement, new diagnoses, referrals to new doctors, swallow studies and very little PTO. The year of the "Christmas Experience" with multiple people SWOOPING in to take care of things that I didn't even recognize that I needed help with... was a truly AMAZING experience. I know that the kids will have an amazing 2012 and I hope that someday I can duplicate this experience for someone else’s family. 

Thank you special family, special elves and a very special wrapping Santa.  The Christmas Experience was a HUGE success!!!