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Queenie’s Bio & Background Information

June 9, 2011

So how did we get here? How did all of this happen to us, to Queenie, to our family?

A Brief Overview & History

In 1990, I moved here to SE Pennsylvania. In 1992, Mommy Bear & my 2 sisters, Queenie & Peepette, followed. In 1994, they bought a lovely little Cape Cod on a lovely little corner in a lovely little neighborhood and were all about leading their lovely little lives.

Here’s the lovely little house:

They set about leading lovely lives, Mommy Bear as a nurse, Peepette eventually as a chef & Queenie managing a clothing store. Queenie especially was enjoying life – she had some good friends (still does), was very active , walked everywhere, had lost a tremendous amount of weight (135 pounds) and by 2003 was really doing well. Her back was bothering her a little bit but she chalked it up to working retail. Her big toe also bugged her some – it was always kind of asleep but not enough to really worry her. By 2004, though, her back was bothering her enough to start visiting doctors.

Diagnosis? Degenerative Disk Disease.

Hmm, that explained the back …but what about that big toe? It kept getting worse & worse. A myriad of doctors, tests & credit card payments later) ….

Multiple Sclerosis.

Oyy. A tough one. But you know, LOTS of people have MS & LOTS of people do just fine, lead great lives, have all kinds of fun and only once in a while does the MS really affect them. Oh and hey, there’s some new MS drugs out there that are really really great & lots of people do really really well on them.

Lots of people that is, except Queenie. Drugs, steroids, treatments…a never ending cycle of “let’s try this next”. None of it seemed to work. Why???

Well, first of all, all those awesome MS drugs people just can’t wait to tell you all about? Besides being horrifically expensive, they are all for Relapsing Remitting MS (RRMS). It turns out that Queenie has Primary Progressive MS (PPMS). PPMS has no treatment options. So after years of being treated with all kinds of drugs & experiencing their side effects, Queenie is now worse off than she was before. Still, she’s living her life, trying to put one foot in front of the other (literally) – working a new job at a bank & keeping on keeping on.

Fast forward to 2009. Symptoms are worsening. MS exacerbation knocks her into the hospital then into rehab for a few months. While she’s in rehab, she runs out of time she can take from her job so they ever so nicely ….terminate her employment (actually they were nice enough to let ME tell her before they sent out the letter basically firing her. Realistically, though, she knew working was no longer an option for her). She got through it …the rehab, horrid side effects from steroids, decreased mobility, losing her job … she got through it. She came home from rehab FINALLY. Things were looking a little better. She was getting some help in the form a power wheelchair (a pink one at that) … it arrived on March 17, 2010.

That very same day Mommy Bear collapsed in the garden. She never woke up. We all muddled through the weeks & months that followed, trying to deal with it. Trying to decide how to live this new chapter in our lives. Trying to figure out how to help Queenie.

So, we decide, the best way to do that is to all move in together. Big Daddy, Locust Boy, Peepette, Queenie & myself. We buy the house, send Queenie off to NY for summer camp with Aunt Dot and rehab the house so she can be comfy.

She comes home. Life is OK., Cramped, lots of people & dogs, but OK. Here’s a dog:

He’s a Jerky Boy but I love him.

ANYWAY…Queenie is home. But things are not right…since Christmas she’s been slurring her words, coughing, sleeping a lot . And losing mobility. LOTS of mobility. Still, she’s able to drive & continues to consult with her neuro on treatment options. Latest idea? Chemo. Scary … but a last chance. Maybe? We’ll think about it. Queenie is pondering the option.

Fast forward to May 2011. We can tell it’s an exacerbation. Dr’s visit confirms it. On May 10th she’s admitted. On May 11th they start chemo – Cytoxan. And that’s where this story REALLY begins.

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