Another Never Ending Attack

It's been a while since I wrote, so many thing on my plate, it's hard to find time to jot down my throughts, though all the new research, new meds, new doctor visits we have.  I'm sorry I haven't stayed up to date with you.  We had a magical 5 days that Solstice had only mild attacks and we were not in the hospital.  We went to celebrate Olivia's birthday at Wine and Painting class, and redid Solstice's bedroom.  She had a couple of sleepovers, as friend time is so rare, and then we attempted a party on Sunday night that landed us in the Vail Valley Medical Center.

Solstice wrote a song to sing on Ellis birthday, as she is the person who did the fundraiser for Solstice while we were in Cincinnati, one of the only reasons we were able to pay rent and continue caring for Solstice this last month.  It was an adorable song, about saving her life and thanking her for caring.  Shortly after, Solstice started to feel sick and before we could get out the door she had a throat attack.  We hit her with an Epi pen and then Benedryl and called an ambulance.  The gut buster of the evening is since Solstice was in an unused dining room of Blue Plate, many party goers did not realize what was happening.  As the Vail Firefighters (known for their hotness, and no Ryan didn't show up) were dispatched into the restaurant, the girls started screaming... YES WE HAVE STRIPPERS!  WHOO HOO!  The sadness on their face when they realized it was Solstice and not strippers, was something I'll never forget.

Vail kept her for a day, as I was hoping the attacks would end, but they didn't and we had to be brought down by flight for life via ground crew to Rocky Mountain Children's.  She has been having nonstop attacks, up to six a day for days now, and she is starting to get really down.

You see, she has a cyst on her only remaining ovary (she had the other removed for a dermoid cyst a year ago) and it's causing immense pain every time her tummy swells, which causes more pain, thus more reaction.  This disease has no real triggers, no real way to control, and it never ends.  She has said many times today that she would prefer to die than to live this way, and it is the most heartbreaking thing I have ever heard.

I am meeting with the OBGYN today to see if we can remove it, and I am hopeful she will understand how important it is that she gets this thing out.  It's grown from 5 mm to 2 centimeters in three weeks.  If it busts open, her body will not be able to handle the toxins and she could be hospitalized for months, or as always, what could happen everyday, she could die.  It's also causing major pain, which increases her stress, which causes her to re attack.  It's a fine line every single day.

I feel so out of control.  I have people say a lot of strange things to me, and I know that all of them mean well, but the one that is most used is.. "Well at least it's not cancer."  The reality is, we would choose Cancer over this condition any day.  Cancer has research behind it, Cancer has good survival rates, Cancer has an ending, either you get cured or you die. And if you do die, you at least have some warning, to come to peace with it.  We, on the other hand are faced with the reality that we have no idea what could set her off, which of her throat swells could be life threatening, and anyone of us, the hospital, Greg, Me, Olivia, could make a mistake and misjudge the difference between a slight throat swell, vs an anaphyalixis episode and she could die anytime, any moment.

I know that I could forgive my husband or my best friend, but I know I could never ever forgive myself.

You see the National Organization says that at the site of throat swelling you must EPI pen and go to the hospital immediately.  But Solstice has a lot of throat swells that give the sensation of not being able to breathe, as her throat swells slightly, but  not completely.  We are able to control it with Benedryl and resemic epi (anti-inflammatory that is similar to a nebulizer treatment.)    We can't give the kid Epi's six times a day, and we can't spend the rest of our lives in the hospital.  We have to find a way to judge the difference, and all the research tells me there is no way.  She can go from fine to dead in minutes.

I don't know what is right, what is wrong, what I can do to save her, how I can help her... except to be the best advocate I can, and hold her hand through the pain episodes.

Please be thankful today for your healthy children, and feel free to donate if you have a few extra dollars.  I am unable to work, and right before Solstice got sick, Greg quit his corporate job to start our new company, green monkey.  Life is throwing us curve ball after curve ball, and one of these time we are going to forget to duck.

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