SWAGG is a free mobile app (download here) that lets you shop smarter using your mobile phone. Buy, send or swap SWAGG GIFTS and organize your old school plastic gift cards.

For every download of the app between now and Dec. 31, 2010, SWAGG will donate $1 to Stand Up To Cancer (SU2C) , up to $125,000.

Clever Girls Collective and SWAGG are sending a pair of movie fans to the Sundance Film Festival! Download the SWAGG app and then visit the Ultimate SWAGG Getaway Sweepstakes site to enter to win a trip for two to the Sundance Film Festival. Entry deadline is January 3, 2011, 11:59pm, PST.

————–

Hanukah is a big deal in my family.  A REALLY big deal.  It may not be a hugely holy holiday for us Jews, but in my family it is an over the top moment.  For years my dad was the ringmaster of the “Hanukah Show” (as it came to be called).  He took great pride in handing out the gifts – many with a story attached to it – and REALLY enjoyed dramatically unveiling the “BIG” gift for someone.  I may have mentioned he is really good at gifts.  You have no idea.

Part of the “rules” of Hanukah in my family and in Husband’s family is that gifts go “down”, they don’t go “up”.  Meaning gifts flow from oldest to youngest and not the other way.  But, a few years ago, Husband and I decided we wanted to do something special for our parents – those living and those who are no longer with us.

This was truly a moment of “what do you get the person who has EVERYTHING?”  Our folks live fine lives.  No one is hurting for meals or clothes or trips or materials goods.  We racked our brain for something special, meaningful and sustainable.

Then it all became perfectly clear.  The other tradition in this family is one of philanthropy.  Husband has been involved in the Good Samaritan Foundation here locally his whole life.  His grandfather had a large roll in the growth of the foundation many, many years ago and since then a member of the family has been on the board supporting its mission.  There is also a family scholarship given out to doctoral nursing school candidates in his grandparents’ names.

For years growing up I watched my mom volunteer in my schools, take part in leading the PTA at my synagogue, sit on Religious School committees, be a Sisterhood member…the examples were endless.  Then a few years ago I watched as she walked into her Battle against multiple myeloma.  She left all she knew and loved to go to Little Rock, Arkansas with my dad to the University of Arkansas for Medical Sciences Myeloma Institute for Research and Therapy.

Not surprisingly, my folks made friends there.  When we would talk they would tell stories of other patients, the doctors, researchers, nurses and staff they met.  On one particularly scary trip I got to meet a few of them.  They are an impressive bunch and left a lasting impression on me.

I’ve worked in Major Giving and have a passion for medical research.  For those of you who don’t know, let me make this next sentence very, very clear:

Money buys science. Science buys life.

It’s an old adage, but it’s concretely true and that phrase jumped out at me in the middle of our discussion of what to do for our folks.

Research dollars.  Scholarships.  An impact and an outcome and a legacy.

We quickly set up the scholarship to honor Husband’s deceased father and his mom at the Good Samaritan Foundation.  It would go to a graduate nursing student who has an interest in oncology to honor my mother-in-law’s triumph over breast cancer and the valiant battle my father-in-law fought against lung cancer for as long as he could.  I got on the phone to Little Rock and we chose to focus the fund on research dollars.  Formal names for the scholarship and fund were chosen.  Official cards were printed and placed into envelopes to hand to my folks and Husband’s mother, aunt and uncle at the appropriate family celebrations.

We did it quietly.  There was no fanfare, no dramatic opening of the envelopes.  We just wanted to say “We love you,” and “Thank you.”

Over the next few days, I talked with my folks about the fund in Little Rock.  They wanted to make a change – a small one.  Instead of focusing on research dollars, as I’d guessed they’d want, they wanted to focus the money for those who had little.  They wanted to support the social workers who do much with little and help out those, like my folks, that leave their homes and families and communities to come to Little Rock, but with far less in their pockets – all hoping for more time and more life.

And so we did.  My parents gave some money to their new fund and took an active role in raising money for it – so much so that the first year that fund raised over $15,000, an exponential boost to the social workers’ coffers.

The scholarship given out to the graduate nursing student helped her get through school so that we could have one more dedicated nurse on the floors of a hospital or walking the halls of a nursing school as faculty.  We can’t get enough of either fast enough.

Neither of these gifts are made of any precious metal, there is no designer label on them, nothing sparkles, there is no bleeding edge technology, there is no fad or trend or cool factor anywhere near it.  But somewhere there is a family sitting in a hospital room listening to monitors beep and whir praying for a vital sign to change that doesn’t have to worry about a hotel room tonight or a meal tomorrow or gas for their car.  And there is a student who just wants to heal people or teach someone who doesn’t have to worry about their books or their childcare or their tuition this semester.

And for one precious moment amongst all too many that whiz past us, our folks knew how much they meant to us and that the examples they set in front of us were not lost or forgotten or taken for granted.

I cannot thank them enough for letting us say “Thank you.”

—————–

Learn more about the coolest new app that revolutionizes the whole shopping, gifting, and gift card-organizing experience and Download the SWAGG app to your iPhone or Droid. I was selected for this sponsorship by Clever Girls Collective, which endorses Blog With Integrity.

“Hi, Pam? It’s Maurice. Gene has passed.”

And there it was. The words that we had all been anticipating for days, that were making Husband jump with anticipation every time the phone rang. They had finally come. And he was finally gone.

We decided not to tell The Swimmy until she got home from school that day. There were meetings to be had, details to be discussed and arrangements to be made and having her at school was better than dragging her through all that.

We told her about her Grandpa Gene and she was okay. We talked again about the funeral that would be the next day, the burial that would happen afterwards and all the things that she would see and hear tomorrow.

The next day we got up, hung around the house a bit, helped everyone get dressed for the long day ahead and left to meet the family at Husband’s aunt and uncle’s home. I told The Swimmy we would all be riding in a “special long car” (limo) and she was excited about that new adventure. The whole way to the temple she looked around, chatted about being in first grade and giggled about things she saw out the window. It was good to have her in the car – she brought some light as she always does to our little world.

When we got to the temple, I took her privately into the chapel where the casket was so that she could see it and ask any questions before we were all bombarded with friends and family and their kind wishes. She walked straight up to it and stood there for a contemplative moment. I kissed my fingertips and put them on the casket’s warm wood and she imitated me holding her hand on the wood a bit longer and with great curiosity.

She was kind and charming with the people who came to pay their respects. She shook hands and smiled and said, “Nice to meet you,” and “Thank you” right on cue.

When we took our places in the front row, she shared ArtsyDaughter’s lap during the service. She sat quietly and respectfully. Husband’s sister was very sad and cried openly and redfaced during certain parts of the rabbi’s remarks and The Swimmy couldn’t stop looking at her. I watched her face and could tell in her little head she was thinking, “Why are you so SAD? Am I supposed to be sad? I think I am a little…” And a few times I’d see her close her eyes and bow her head. I wasn’t sure if she was imitating what she saw, but it was touching nonetheless.

I kept waiting for the moment where all this would hit her. I didn’t expect tears, but I knew something would happen that would help her realize the weight of the situation – or the permanence of it. This moment happened at the cemetery.

We all loaded back into the limousine to ride to the cemetery after the service. Again, I walked her over to the gravesite privately to make sure she could ask questions or react without the hundreds of people around. We spent some time talking about the headstones – she was very concerned we wouldn’t know where Grandpa Gene was going to be – and reading the others that were around his site.

Then she wanted to see “the hole” as she called it. We walked over so she could look in and she looked straight down to see a cement liner at the bottom of a very deep hole. You could see on her face that her mind was racing. “That’s so far down. You can’t get out of that kind of hole…” When she looked at me I could tell that she was beginning to realize that this particular situation may, in fact, be irreversible.

We took our seats again in the front row before the gravesite and the cemetery workers placed scaffolding on top of the opening where the casket would rest. I told her that her cousins will take the casket out of the hearse and place it on top of this and then after some prayers are said, the casket would be lowered into the hole.

This time she sat on my lap during the brief service. I told her they were getting ready to lower the casket and she asked, “Mommy? Is Grandpa Gene sleeping?”

“No, sweetie. He’s not. Sleeping is different from being dead.”

“Why?”

”Because when you sleep, you are still breathing. Why you die, you don’t breathe any more.”

And as they started to lower the casket, she hopped down off my lap and walked up to stand next to it with her little feet together, hands clasped in front of her and head tilted slightly to the side in a pose that simply said, “I am sad for you.” I wish I had a camera to capture that image, but in my mind I know I will never forget it as long as I live.

It was at that point that Husband became redfaced and cried. And I definitely joined him a bit.

In Judaism we are taught that one of the finest things you can do (a mitzvah) for someone is to help bury them by placing a scoop of dirt on their casket. I talked with The Swimmy about this and, at first, she didn’t want to, which was fine. THAT could be a bit much for a six year old to deal with. But then, they brought out a small pail full of sand/dirt and a small hand trowel and she decided it was okay. She may have thought she was playing sandbox, but I think she felt more comfortable with the little shovel as opposed to dealing with the full sized one.

She was so okay with it that she put 6 scoops of dirt and I finally had to stop her. I told her that this next one was the last one so she took a scoop, placed it over the casket and said, “G-d bless Grandpa Gene.”

I might have cried a little more.

As I think back, I know I wrestled with whether or not she should attend the funeral and burial. And I now know I made the right decision. I am amazed at how well she handled everything and completely blown away by her thoughtfulness, inquisitiveness and compassion that she showed. Oh, sure, there have been more questions as the days went on, but she continues to thoughtfully consider the answers and weigh in from time to time on her experience.

As a parent, this has completely floored me. This little mind and heart asks such complex questions and all I can do is try to be straightforward, honest and simple in my response. And it’s hard. It’s hard to boil all this down to simple, meaningful words. It’s hard to figure out a way to educate not only on life, but on faith…to try not to instill fear of the unknown…to help her not feel left behind but to feel connected to those who are with her now AND those who have gone before us.

I’ve gone to bed exhausted these past few days, but we’re all sleeping pretty peacefully in the scheme of things. I hope you are, too.

It was now time to have that discussion with The Swimmy for the first time in her little life. I was a little unclear about how to fill in some of the details, but thanks to two friends named Wendy I got some good advice and Husband and I sat down to talk with her about her Grandpa Gene.

She was sad, and I think seeing her Daddy cry was a little surprising to her, but I believe it went okay. She asked good questions and we answered them truthfully.

In the hours that followed, she had some more questions – some I anticipated, some I didn’t. It’s charming to me that even through our sadness and other mixed emotions that we can still find kid-logic-induced humor in the midst of this. As I was tucking her in, this is how it went,

“Mommy, how does Grandpa Gene get buried? I mean, how does he get in the ground?”

“Well, some men who work at the cemetery will dig a hole to help.”

“But won’t he get dirty?”

“No, sweetie, he won’t. He will be in a special box made of wood called a coffin so he won’t get dirt on him.”

“Well, but what about his clothes? How will he get them?”

“He doesn’t need his clothes any more. So it’s okay.”

”You mean he’ll be naked?!”

”No, he’ll have clothes on. But he won’t need any other ones.”

“Oh. But won’t he get sweaty?”

“No, Boo Boo, he won’t. When you die you don’t need your body any more – and it doesn’t work any longer. So your body stays here and the special part inside of you and the little piece of G-d go up to be with G-d and watch over everyone you love.”

“Just like Earline?”

“Yes.”

“So they’ll be together?”

“Yes.”

“That’s good for them. But I’ll still miss them.”

“Me, too.”

Every day she asks if Grandpa Gene is gone and I tell her not yet, but he’s resting comfortably. She seems okay with that. I’m sure there will be more questions, but in the meantime we wait.

G-d bless her Grandpa Gene.

“Well, every day’s a new day.”

I believe I’ll retire that phrase after this ordeal. Because, not only is every day a new day, every HOUR is a new hour. Seriously.

When I arrived at the hospital this morning, the news was that her saturation rate was 99%. All night. That my friends, is almost progress. I say almost because in medicine, it’s never just one indicator that allows you to declare victory. Well, rarely one. (A biopsy is pretty damn definitive – either way.)

So, with oxygen going full blast, her sat rate had increased. Good and bad. Good that it increased and held. Bad that the only way she stays at 99% is by full-throttling the oxygen and that if she takes off the mask, it drops to a scary 85% almost immediately.

But I’ll take that.

Then, we wait for the (now) daily chest x-ray. If it’s worse, we know what that means. But, it comes back and we’re told by one doctor, “It’s about the same.” For many, this would be cause for concern. Given the aggressive nature of the lung issues, the fact that nothing had progressed any further is okay. Later, a pulmonologist will tell us that he believes the x-ray shows a roughly 15% improvement. Not huge, but an improvement.

I’ll take that, too.

Yesterday they gave her medicine called lasix which is essentially a diuretic that helps the body get rid of excess fluid – because they thought part of the problem is fluid in her lungs, not just pneumonia. She basically peed off three LITERS of fluid yesterday and today continued to “output” a ton of stuff. Could this have helped her lungs? Don’t know. Hard to say, but it does mean her kidneys are functioning well.

Yep. Take that, too.

Today they let her eat real food. And she did. She even commented that this particular hospital has the best “institutional spaghetti” around. It’s delicious. And she gobbled it up in hundreds of tiny bites. You could see her perk up a lot after she ate. Like the food actually gave her some energy.

You bet we’ll take that.

But the best sign today was when my aunt noticed someone had left what looked to be a Louis Vuitton bag on a desk outside my mom’s ICU cubby / room for quite some time. She couldn’t believe someone would just leave a Louis Vuitton purse out in the open like that – completely unattended. Without missing a beat my mom and I replied in tandem, “It’s not real.” Even through oxygen-starved moments of dimensia my mom could make the knowledgeable fashion faux pas call.

Bring that shit on.

We aren’t declaring victory and we aren’t out of the woods by any means. But, sometimes it’s the little things. And who knows, the little things could lead to more little things. I’m not greedy. It doesn’t have to fix itself in 24 hours. I’ll be patient.

But tomorrow? If there are more little things? I’m hoping to say we’re on the first stone on the long path to victory.

And I’ll take that all day long and twice on Sunday.

But then the pulmologist came in. And his opinion made us catch our next breath. His opinion was nothing like the radiologist’s. His was much, much scarier.

Basically he said some kind of virus (best as they can tell) has roared through her lungs and done considerable damage to the areas between the lung cells – or the interstitutal areas and she was losing lung function. She needed to be moved to the ICU where she could receive oxygen in a better way and we needed to try massive doses of steroids to hopefully reverse the inflammatory process that is progressing aggressively.

The message was not delivered gently, but it was clear. If the steroids don’t work, we’re going to lose her.

Is it ironic that it feels like we are holding our breath for the steroids to work – and my mom is struggling to breathe? Or is it in bad taste? I don’t know. My day started at 4am and I lost my ability to think clearly hours ago.

We’ve spent the day making phone calls to friends and family with updates – each with the caveat that Mom, my Grandmother and The Swimmy know none of this – and never will in a perfect world. We visit with friends and family and apologize lovingly for not allowing them the opportunity to visit my Mom…because if she saw a flood of people showing up at the hospital, she would know something was wrong. So, we keep the secret. We shoulder the burden no one should ever have to carry. We protect until we can’t any longer. It’s all we can do, and the most respectful act we can carry out.

There is so much more to write, but I just can’t get the thoughts out of my head and on to the paper. So instead of fumbling through the words that just aren’t coming, I’m going to hit publish and go to sleep.

But before I do, I’ll say the prayer The Swimmy and I say every night.

G-d bless the ICU, and all of our friends and family. And keep them safe and happy and healthy. Amen.

I spent most of my breath uttering the words, “Okay, what do you want me to do?” because, seriously?, I offered very little except a warm body, which was enough sometimes.

Mom has struggled with a really high fever for the better part of a week – and that’s just (a) unsettling and (b) scary. What’s more aggravating is that no one can tell us where the g-ddamned thing is coming from already. She’s subjected to test after test after test which takes hour after hour after hour of waiting with very little answers at the end. The answer is always, “Well, we just don’t know. We’ll just have to wait and see. Don’t worry, we see this all the time.”

Well, dickhead, WE don’t see this all the time. WE are not big fans of 104 degree temperatures and uncontrolled body functions and are pretty sure they are BAD things that should be stopped.

Or did I miss a memo?

My folks ran into some of the best and worst nurses this week. I observed some of the same, along with some mediocre doctoring.

(As an aside, I am a terrible person to have sitting around a hospital. You see, I work for a hospital, so I know some of the bullshit that goes on from the administrative side. But, I work for a hospital that is about to launch a care model that is how medicine SHOULD be delivered – and so my standards for how a patient should be cared for are THIS HIGH. I hate to be reminded that this is not how it is. Especially when it’s my mom who’s the patient. Aside over.)

My favorite was the surgeon who came in spouting all this crap about an upcoming gall bladder and abdominal / pelvic scan. She went all the way down the path of “oh, we’ll look at both and this could range anywhere from nothing to having to remove her entire colon.”

Are ya kidding me? Why would you say that? And, more importantly, why would you sit here and talk about this test FROM ACROSS THE ROOM WITHOUT EVER LAYING A HAND ON YOUR PATIENT?

Maybe you should examine her abdomen (which the attending physician said was getting better)?

Maybe you should temper your discussion in front of your patient who is so tired she can’t stay awake?

Maybe you should consider how you would act if it was YOUR mother laying in that bed?

But!

I talked with Dad this morning and Mom’s fever was never higher than 99.4 all last night – and that is something to behold, my friends. I’m hopeful we’re now going to be moving in the right direction.

And!

As a welcome home present for me, Benjamite slept from 9pm to 3:57am. Love that guy.

Yep, I’m here. First, let me say that Little Rock is a lovely little town. Everyone is very nice. Really nice. Like, cars actually stop and wait for a pedestrian to cross the street nice. It’s unnerving. Rush hour traffic is 4 cars waiting at a light. Seriously!

My folks were lucky enough to score a very sweet pad in an awesome high-rise building that overlooks the river for their stay here…too bad they aren’t here – the hospital has nothing on this place. Out the window in bedroom number one is the (wait for it)…Clinton library…complete with his 6,000 square foot residence on the top. I can’t even look at it.

After visiting with my mom at the hospital for awhile, Dad and I went to grab a bite of dinner. Actually, we decided to go find a restaurant where we could pick something up and bring it back to the FabuPad to eat. So he took me to the Dixie Café (or something like that). The menu was as you’d expect, fried catfish, fried chicken, fried okra and… fried corn on the cob.

I shit you not. My arteries got a little constricted just reading it.

I didn’t know what to expect when I came here, but I will carry the following image in my head as a landmark memory of my time in Little Rock, brief though it may be. I got off the plane and headed straight to baggage claim. I was waiting at the carousel for the handlers to start throwing baggage down the chute when I noticed the carousel next to us was for a Delta flight coming in from Orlando. The passengers had on the requisite Mickey Mouse shirts, bags with Magic Kingdom on it and many, many Disney Princess items scattered about. But upon second glance, I realized most of the passengers also resembled each other in another way.

Most of the men were dressed as follows:

Cut off shorts (khaki)

Flip flops of varying degrees of “worn”

Hunting shirts

HUNTING SHIRTS, people. Not t-shirts with hunting slogans. ACTUAL HUNTING SHIRTS.

That is all.

Mom is holding her own, but not out of the woods just yet. I am of no help to her whatsoever, except that I bring stories from home and can try to carry on a conversation about something other than drugs, nurses and vital signs for a short time. She’s had some terrible nurses (OMG) and upon hearing these stories I immediately told my dad to pick up the phone to call a family friend here who is closely associated with the medical center so that she may open up a can of whoopass on the appropriate hospital administrators. He wasn’t so inclined to do that immediately (as he was busy trying to save my mom’s life), but today when she called to check in he did mention a few details of their difficult experiences. Thirty minutes later they had two administrators in mom’s room apologizing and addressing the issues. Damn straight. And we ain’t done yet, bitches.

Again, I know I can’t do much, but I know where to find the big sticks to swing in a hospital. And I brought my bat with me this time. I’ll relay some of the stories later after everyone is past this.

Dad’s at the hospital again for the night – he hasn’t slept in 40 hours. Because of the horrible nursing experience – and one horrible night where he thought he’d lost her – he won’t leave her alone until she’s really well. It’s a sad state of affairs, but he has had to play doctor more than once on this journey because the care is more than a little disconnected, to say the least.

I, for the first time in 10 weeks, will get to sleep all night…allegedly. I doubt I will, though. And then tomorrow I’ll go sit with mom while dad comes back to the FabuPad to work a little, shower and sleep.

That’s about all I can do. But at least it’s something.

Mom and Dad had to return to Little Rock the first of September to do the second stem cell transplant. This was the subject of MANY discussions within our family for a variety of reasons…timing, need, recovery issues, dangers… they were all still there.

You see, in this battle, the weapons are as deadly as the enemy. And there are reasons NOT to use them.

But, right now, she is disease free. And that’s a hard argument to negate. The treatment regimen is working. Perfectly. But the treatment effects totally suck.

And that brings me to where we are right now.

From the massive chemo before this current stem cell transplant mom is now neutropenic, or has roughly 2 white cells in her body, which is where she is supposed to be right now. The problem is that she has contracted a dangerous bacteria in and around her colon that is causing major problems and now she is in jeopardy from the very treatment that is supposed to be extending her life.

It’s amazing where science has brought us, isn’t it?

The next four or five days are important ones. I can’t say it any differently or any plainer. And I’m off to Little Rock once I get things in order here.

Happy New Year to those who are celebrating it – and happy Friday to those who need it.

But! Before we were completely freaked out by Snakes On The Porch, we had a very big couple of days around here.

First, the Mighty Mighty Benjamite got blessed and his Hebrew name this weekend. It was a lovely ceremony filled with friends and family and Husband and I almost got through our remarks without crying. He behaved (!!) amazingly well – he was either sleeping, eating, or looking around the whole time.

May he always be so easy-going. And let us say, Amen. Here are some pics of baby-Swimmy goodness. And the folks that love them.

Next! The Swimmy started Kindergarten on Monday. She bolted out of bed at 6:30am and threw her clothes on. She came racing into our bedroom asking when (for the love of G-d!!) are we leaving to go to her new school?!!!

I was a total mom-dork and took pictures of her outside her new school, but we had a small scientific screw-up with the camera. You see, I live in the most air conditioned part of the country. Seriously.

But when you take something chilled by air conditioning and stick it out in the awful humidity of the early morning you get, uh, fog. So, my pics are a little, uh, foggy. The camera recovered once we got inside, but so much for “capturing the moment”!

She was awesome. I could tell she was a little nervous, but not terribly. We marched into the school and she went right to her classroom. We met one of her tablemates (who had NOTHING to say and prompted The Swimmy to ask why she was so shy), put her backpack away, and she turned and said (not surprisingly), “Okay, Mommy! Bye!”

And that was that.

As I walked out of her room, there were a ton of parents “hovering” just in case their precious one got upset or freaked out. I breezed past them, grinning. But as I walked out of the school to my car, I might have had a little lump in my throat thinking about her next six years here.

But that passed. And it was just another Monday. Except for the snakes.

The downside is, well, it’s damn hard to go back enthusiastically. The first time, all the anxiety was wrapped up in the unknown. What is the treatment? What are the side effects? Am I going to feel really sick? How does hair loss happen? Can I be the supportive partner?

This time, because the treatment regimen is essentially the same thing, just on a compressed timeline, they know what’s going to happen. And, while it isn’t horrific (relatively speaking), they know enough to know it still sucks. There are still schedules that will get screwed up, medications that mess your personality up, chemotherapy that screws with your body and basic sense of tastes.

Hard to get fired up for that, huh?

But, I hope they can gather some strength and motivation from the shorter timeline and promise of a longer “break” at the end. And I hope they can gather strength from each other. I’m sure being on a path like this is a tremendous strain on any relationship. I have to wonder what impact this kind of experience has on a marriage. Kinda like everything else in life, I guess you have two choices: better or worse. (Wonder if that’s why those are in the secular wedding vows?)

The Swimmy is missing my folks a little more this time. She, too, knows more this time. Talking on the computer isn’t as novel and isn’t as great a substitute, so we’re trying to get more creative with how we communicate “virtually”. But, nothing substitutes for an actual hug. To her credit, she is understanding and knows that they are in Little Rock to talk to doctors who will help “everyone feel better.”

You got that right. Go Razorbacks.

UPDATED TO ADD: Mom went to the doc today for an evaluation before she starts her treatment this time. Result? MYELOMA-FREE, BITCHES! Woo!