MindiTheMagnificent

Ye gads! I do remember how to do this!

2012-05-06T23:34:00.000-07:00

I realize that you are waiting anxiously to hear about the gala and meeting Gregory's donor, Katie. There are a few things that I am waiting on. DKMS is putting together a video of the event and I'm also waiting for permission to share some additional images. I must admit that I am also hoarding those memories a bit. They are incredibly sacred to me and I have this desire to hold them close to me for a bit. Soon.

Ever since meeting Katie on the 26th of April, I have been walking around in this bubble of bliss. For some reason, that meeting triggered something in me to melt. Allowing me to rejoice in the survivorship that we are currently experiencing. I feel as if I have clouds strapped to my feet and I'm floating.

On Wednesday past, we attended Gregory's 'Welcome to Montessori' dinner. This little ceremony welcomes the incoming first graders to the program. A good half of the families in attendance were existing Montessori families, like ours, with older siblings already in or through the program. They, like the teachers and our principle, have watch from the outside as Gregory and our family have traveled this road from diagnosis, transplant, isolation, recovery and tentative re-integration. Part of the night is to call each new student to the front for recognition and they receive a Jefferson Elementary themed welcome packet. Having a last name that begins with a B, Gregory was one of the first called. Our principle gave him such a warm welcome, getting down to his level and expressing her joy at him being there. Gregory did receive a loud 'Woo hoo!' from his mother as he went up and plenty of snapshots. The lighting in the gym is less than perfect, so the images are wonky, but we have a few to remember this oh-so-momentous moment.

He was even sporting his Peach's Neet Feet 'INVINCIBLE' shoes. <3

I am still in awe of the fact that Gregory travel 2,500 miles cross country, in an airplane, visited NYC, attended a celebrity gala, met his life-saving donor, traveled back, then did not miss a day of school the following week. Without missing a beat, without me having to touch, or even think about, a thermometer. He hit the hay exhausted each night, but he is LIVING, THRIVING and SURVIVING. These days I am finding boundless joy in these daily events. Sure, there is a tinge of sadness, but I'm no longer drowning in it. Today. In this moment, sadness is taking a backseat.

As we were leaving school that night, Gregory bounded down the steps excitedly asking, "How many days 'til I get to come to Jefferson?"

A friend shared this tonight and it is FABULOUS! A bunch of patients and staff at Seattle Children's/Seattle Cancer Care Alliance put this video together. It is glorious.

With a much clearer head, we are leaping into our planning for this year's St Baldrick's Yoga People Care event. If you are interested in having a YPC event in YOUR city, drop me a line. Not all childhood cancer research fundraising has to look the same and this event will change your life and the lives in your community. Our fearless Spokane Yoga Shala leader, Katie Gehn, put this together from last year's event.

So much GOOD stuff happening these days. Stay tuned. I remembered how to do this writing thing.

With JOY (and Katie) in my heart!
MindiTheMagnificent
~Momcologist

*Get swabbed. Save a life. YOU could be the next Katie to a Gregory and Family that is desperately waiting for a bone marrow match. Click this link, enter your information and DKMS Americas will send you a swab kit. Don't wait. Families like ours are counting on people like you.
www.getswabbed.org

DKMS Gala and Gregory's Bone Marrow Donor ~ Part IV

2012-05-03T14:49:00.000-07:00

Part I ~ Back Story

Part II ~ Tuesday

Part III ~ Wednesday

"Today is the day I really didn't think would come. I certainly never imagined it would look like this! T minus 11 hours before we leave." ~ My first Twitter/FaceBook status for the day.

Thursday, Arpil 26, 2012 proved to be The Best Day Ever. Once again, I let The OffSpring sleep as long as possible. Aside from the gala, the only thing we had planned that day was lunch with my fellow 46 Momma, Susan. Little did I know that Susan was going to completely take The OffSpring under her wing and show us the day of our lives. She pulled up to our hotel at 11:00 and the four of us poured into her VW Eos. We headed up Church street to Times Square. What a sight to see. Cannot WAIT to get back there, someday.

The OffSpring were starving, after parking the car we headed to Bubba Gumps. The OffSpring had their drinks in sparkly glasses:

The view from our table:

Another one, 'cause they are so stinkin' cute:

I had a blast. The OffSpring had not been properly indoctrinated to Forrest Gump before we went, so they were pretty clueless. I do have to tell you....... I was the Queen of Forrest Gump Trivia. Admittedly they were pretty generic questions, but we did get to keep our napkins. Having no access to napkins at a meal like that is a traveling mom's worst nightmare! Curtis fell in love with clams and mussels. They have the BEST Hush Puppies and Gregory still had pizza. Kid's pretty consistent.

We walked across the street to the GINORMOUS Toys R Us. Sheesh! Did not expect THAT. Place is like four stories high and has a Ferris Wheel.
Proof that Curtis was with us and proof that he is a teenager! Grainy cell phone pic, I know. Better than nothin'!

The more cooperative duo:

We spent the next hour or so being completely overwhelmed and overstimulated by the offerings there. They had a real life Spiderman and Iron Man. At first Gregory was all excited to have his picture with them, but the closer we got to them, the more freaked out he started to get. Ultimately he wanted nothing to do with them. Darn it! We spent quite a bit of time 'ooooooooing' and 'aaahhhhhhhing' over the fun sweet treats in Candyland. To the tune of $63- in CANDY! My inner granola was cringing. *shrug* Still can't believe how much time we spent there. Time has a way of slip, slip, slippin' away. We were starting to cut it close. I wanted to have a little down time before we had to start getting ready for the gala. So we began getting our hineys to the car.

Along the way...... walking down any street in that city can be an entertaining experience. Throw in Times Square and I could spend all day just people watching. AnnMarie and I picked up the requisite 'I [heart] NY' shirts and Susan and I had our picture taken with the Naked Cowboy. *tee hee*

We made it to the car, Susan put the top down and The OffSpring had the greatest car ride I think they have ever had. She plugged in Curtis' ipod and we cruised down Bleeker Street blaring metalish music with Curtis trying to act like he didn't know us and AnnMarie and Gregory rockin' out, fist pumping the air. Yes, it was terribly obvious we were tourists. Did. Not. Care. That's what we were!

Hostess with the Mostest.......

Yes, I am fascinated by NYC parking solutions!

Then only shot of Curtis I could get. Playin' it cool.

Ye gads I love this Momma.........

We made it to our hotel, rested and then began the giddy task of preparing for the NIGHT of my life.

Sneak peek:

To follow: Part V ~ The Gala

Cannot wait to tell you about meeting Katie.
MindiTheMagnificent
~Momcologist

DKMS Gala & Gregory's Bone Marrow Donor ~ Part III Wednesday

2012-05-01T23:09:00.001-07:00

Part I ~ Back Story

Part II ~ Tuesday

I knew I would forget a detail or six. I failed to mention our first meeting with a DKMS staff member! Once we were checked into our hotel rooms on Tuesday, we received a visit from Alex, a DKMS employee. I can't remember her exact position, sorry! Gregory's donor and us each had a 'handler' for our time in NYC. Part of their job was to make sure all of our needs were met and we were enjoying our time. (I know!) The main part of their job, though, was to ensure that the two of us never saw each other until the moment of our stage meet at the gala. Our 'handler' was originally scheduled to meet us at the hotel and it kind of worked out perfect that Alex met us. She had a chance to see all of us 'in the flesh' and AnnMarie and I also showed her our gowns for the gala. This gave her a clear picture of who to avoid at the gala, before our meet with Gregory's donor. It may have been coincidental that Alex was available, but I think it was perfect. Alex was GREAT! She showed up with a gift bag of goodies for us, little things, but they were a hit with all of us. We went over our itinerary, clarified anything that was hazy and offered me a touchstone until we met with our 'handler' the next day. I have to tell you, the DKMS staff are energized with what they do and are such a pleasure to work with. Love them.

Wednesday, April 25, 2012

Our first appointment for Wednesday was to meet Alina, our 'handler', in the hotel lobby for a trip to the tux rental shop for the boys' tux fitting. The OffSpring were off to dreamland fairly early the night before so having to wake early-to-us West Coasters really wasn't much of a problem. We all adjusted fairly quickly to the three hour time difference. I blame arising at 3:00am and traveling all day for that! AnnMarie showered first and she was so excited to use the hotel bath robes. This girl was built for a life of luxury.

Figuring out what TV channels we had on our THREE TVs.

Gregory was a little harder to get out of bed, but I let him sleep to the very last moment possible.

Yes, that is his stuffed cat. Just like the one at HomeHome

We eased ourselves into NYC eating. There was a Subway across the street from our hotel, so we trucked on over there for breakfast. Hey, it wasn't fried! Totally better than eggs, bacon and hash browns!

We met Alina downstairs and our day on the town began. One of the things that Gregory really wanted to do while in NYC was to ride a NYC taxicab. Since learning of our trip, Gregory has had his eyes peeled for taxis in Spokane. We don't have that many, let alone yellow cabs. Somehow he knew that NYC would be teeming with yellow cabs and it did not fail him. We all piled into a taxi and headed to midtown. There was much rubbernecking along the way. It was a fairly short trip.

Curtis was fairly easy to fit. He may be tall, but he's not super slim. Quite average. I have no idea what was clicking in that brain of his, but he seemed to be soaking up every moment. The guy who was measuring the boys was fantastic.

Had to snap fast with that first picture, before he knew I was there. He came out of that room and the fact that this kid is growing up hit me in the heart.

Next up was Gregory. He was harder to fit, but they did a great job. He is so slim we had to go with a size four jacket, but it was a bit short in the length of the body and they had to let ALL of the sleeve length out. I love how Gregory has his arms and hands pointing straight down, patiently waiting for the tux guy to get him sized. This poor tux guy was running his butt off, too. It was empty when we arrived and then it started to get crowded and I think he was the only one taking measurements. Arrangements were made for the tuxedos to be delivered to our hotel and we split.

Our next stop was a meeting with Katharina Harf, COO of DKMS, at her home. We had some time to kill and AnnMarie mentioned that she had wanted to take a subway ride while we were there. So..... we did! We walked over to Union Station. Union Station is HUGE. Gigantic.I was simply tying to keep up with all three OffSpring while they gawked. I don't really remember much of what we saw or how we got to where we were! Thankfully Alina was very familiar with where we were and where we were going! She did snap a shot of us, at least those of us willing to be photographed!

Lower right. Yes, that's us.

Somehow we found ourselves on a Subway, screaming along underground. I think we were on an express. AnnMarie did not think much of it, but at least she can now way she road a subway in NYC. Once we were street side, we found ourselves in the Garment District. Tons and tons of street vendors. AnnMarie found a couple beautiful Pashmina scarves of her very own, bought with her own money. She is one proud and frugal girl.

Before we knew it, we were at Katharina's home. I have this fierce desire to keep those moments between us. They were beautiful, intimate and open. She is expecting with her first child, due June 18. To see her, full of life, was a beautiful site to behold. I'm hoping that we are able to stay in touch through the years. She means an awful lot to this Momcologist, for so many reasons. She had wrapped gifts for all the kids and each something was perfect for them. They played comfortably and everyone got to know each other a bit. It made Thursday's gala so much more relaxing. What a gift she is.

Of course everyone was starved by this point! Alina treated us to lunch at Bread in Tribeca. Food was amazing and my OffSpring were so THEMSELVES! Gregory ordered the kids' cheese pizza, he loved it. AnnMarie and Curtis ordered steak. Yes, steak. We expected an eight ounce portion. O.M.G! The portion was HUGE! I can only imagine what the waitstaff was thinking as they took their order! Needless to say they did not finish their meals, but they did have plenty for dinner later! Or a snack as it turned out.

Tired and hungry.

No, this was not New York style. Yet.

She LOVES her scarves.

We said our good-byes, issued 'see you tomorrow!'s and headed across the street to our hotel for a bit of a rest. We do not live in a city that requires a great deal of walking. Gregory is not accustomed to it, especially. They were in need of some downtime.

After a bit the OffSpring were a little restless and we decided to go looking for something to eat on the streets. We took off down Church Street and just kept walking. Before we knew it, we were a very short distance to Ground Zero. We decided to go check it out. The OffSpring did not think much of it, but I'm very glad that we at least went. We did not do the tour, ye gads that would have done them in! We sat on the cement wall, beneath the wrought iron fencing of the church across the street and I shot a few pictures. The sun was setting and people were scurrying off after the work day. There were also plenty of tourists mixed in. It is VERY hard to get meaningful pictures of something so vast. These will certainly remind me of being there and help to conjure back that memory.

On our way back to our hotel, we found a pizza place. We were all dying to try the world famous NYC pizza. We stopped at Dona Bella. I tell you what. We were all SHOCKED at how good it was. I have NEVER had anything like it and the NYC Pizza Legend held it's glory. Curtis had something with mushrooms, AnnMarie and Gregory had cheese and I have no idea what was on mine, only that it was nothing but cheese and mouth watering. We loved it.

All day, Curtis had his eyes on these Trilby hats that were everywhere. What he was looking at, though, were all woven. He wanted a solid black one. We walked by a place that was selling them and Curtis found his hat. This moment was unforgettable. We made our purchase, he walked out of the shop, plugged in his ipod, put on his new hat and my kid began to STRUT down the street. It made my heart soar to see him step into a piece of himself. Pretty cool to witness.

AnnMarie and Gregory had their eyes on the corner fruit stands. We stopped by one, picked up blueberries, strawberries and grapes. We had dessert back at our hotel.

Don't get me wrong, there was still plenty of sugar.

Good gravy, this child was tired. Happy, but oh, so, tired.

In case you were wondering where to go in order to Get Swabbed!

Katharina sent us 'home' with our goodies in this awesome bag.

Wednesday was FAR from a typical tourist day in NYC, but I thought it was better. We spent our time with people who lived there, worked there and loved there. It was busy, but not crazy, and the OffSpring handled it so perfectly. Thursday was the day of the gala, so we hit the hay early. I was far more comfortable in our surroundings and I slept like a log. So much better than the night before.

Part IV ~ Gala Day to follow.

Love, love, love....
MindiTheMagnificent
~Momcologist

DKMS Gala & Gregory's Bone Marrow Donor ~ Part II

2012-04-29T01:33:00.000-07:00

Part I ~ Back Story

Even just though just a few days have passed, I am having a hard time remembering the details. I should have been writing as I went, but there was just too much going on and I wanted to 'live in the moment' as much as humanly possible.

We arrived at the airport and had to wait for the ticket counter to open. Yep. We were too early. What? You think we were excited to get going? Once the window opened we were told that we could check in at the kiosk. Cool. Done. Tickets printed. But, wait.... my ticket says Mindi Finch. Crap. Tickets must match your ID. My ID is under Malinda Finch. Back to ticket counter. Tell guy the deal. Guy's response: "Ugh. This is a pain to fix." Amazingly the fellow to his right was a 'I know all the tricks.' whiz. After some lengthy keyboard tapping my ticket was corrected and re-issued. *whew* Thankfully we live in a small city and The OffSpring had their first TSA experience in a nearly empty airport. Of note: TSA employees have zip for personality. Zero. Zilch. Nada. Don't know if they train them to be that way or they intentionally hire the personality-less population. We headed to the gate and sat to wait some more. All three of them were bouncing back and forth between the windows and our seats. Checking out the planes, offering all kinds of conjecture about the planes in front of them. We boarded our plane and we were split into three separate rows. At first I was bummed out by this, but it turned out to be a GREAT thing. AnnMarie had a window seat, Gregory had a window seat with me beside him and Curtis was in front of us with a window seat. Not sure if DKMS planned it that way, but all three kids got a window seat for their first airplane ride and there was not one ounce of arguing.

*A note on pictures. I don't have that many. Those that I have are either grainy from my phone or hurried from my camera. Juggling luggage, personal items, three kids and new experiences resulted in my inability to capture much of anything. No big deal, really. Except I can't download the images in my head to you. what I do have will have to suffice. Also? Curtis is 13yo and extremely teenagery when it comes to the camera. He refuses to let me take his picture.

How's your flight, Gregory?

Sister?

Curtis.

The flying part was OK for them. Not too terribly exciting. I will say that Curtis had the luck of the draw flying into NYC. He was the only one with a window seat and had the view of Manhattan as we flew in. Turkey. Our layover was Minneapolis and we had a scant 30 minutes to get to our next gate. That airport is HUGE! Not what I expected. They did great and we made our flight. We discovered EARLY that Curtis' tree trunk legs out flank Gregory's tooth pick legs by a very large margin. Everyone along the way to our gate knew Curtis' name. "Curtis, would you slow down.", "Curtis, wait.", "Curtis, be respectful to your brother." etc.....

We landed at LaGuardia and our adventure really began. We made our way to baggage claim and standing among the other drivers, was a man dressed in black holding a sign reading "FINCH". Talk about surreal. He and Curtis got our luggage, loaded it into the car and off we went to Manhattan. It was 3:00 in the afternoon, local time. The traffic was pretty thin and we made great time. Our home for the next several days was Tribeca at the Tribeca Grand Hotel. Let me tell you, this hotel was very unassuming, yet extremely posh. Which I guess would be the truest from of luxury. It wasn't until our stay was nearly over that I realized why the lighting was so dim. Out of respect to the privacy of it's guests. Yes, it was that kind of hotel and neighborhood. Which set my anxiety soaring. Aside from keeping Gregory healthy during this trip, my two biggest worries were keeping The OffSpring safe and fed.

We were checked in, our luggage taken to our rooms. Yes, rooms. We had a one bedroom suite and the adjoining two bed room. Plenty of room for all of us. They had also asked us if we wanted a goldfish in our room. Yes. A goldfish. We have goldfish at home and the OffSpring were tickled to have a friend in the rooms with us.

Our friend for a few days.

The OffSpring had heard that NYC was an extremely noisy city. They were worried that they would not be able to sleep over the noise from the street. Our hotel had that covered.

Pretty slick.

Part of our view from the two bed room. Crazy parking!

After we were settled, we headed out to find some grub and get our bearings. Not having any idea of where anything was, where it was safe to walk and what the area had to offer, we headed out to whole foods. I needed to know where a store was, in case I needed anything. As it turned out it was quite far from our hotel. After a long day of travel, AnnMarie and Gregory were spent. They were amazing troopers, though. We got what we needed and headed back. After dinner the OffSpring were ready to crash. They went down and I tried to sleep.

I couldn't. I don't think I've ever felt that kind of anxiety before. We had three more days ahead of us and I did not know anything. Just thinking about it now sends my heart racing. If the next few days were similar to getting to Whole Foods I was in trouble. We would manage, it just would be a challenge. Gregory has very little endurance and he still had a cough. His wellness is/was/forever will be my first priority. In the spirit of honesty and full disclosure I also need to add..... I had not had a cigarette since we left Spokane. Yes, I smoke. Can't seem to quit. I'll get there. Someday. I had hoped that I could abstain during this trip and then be done with the whole mess. Nope. My racing heart, churning stomach and confused brain just could not sleep. I snuck out the door, headed downstairs and had a smoke. Best decision I could have made. My mind quieted, my heart quit racing and I was able to realize that we would be OK. Don't judge me. Addiction is a beast, compounded by stress and anxiety. This is my reality.

Finally I fell asleep, all was well in our world. We were in NYC and getting ready to meet Gregory's live-saving bone marrow donor. Amazing things were about to happen.

Part III ~ Wednesday

With an OPEN heart.
MindiTheMagnificent
~Momcologist

A view from the suite. That's the new WTC being built in the distance.

DKMS Gala and Gregory's Bone Marrow Donor ~ Part I

2012-04-29T00:02:00.000-07:00

It's currently 11:15pm, the evening of Saturday, April 28. Daddy is sawing logs and The OffSpring are spending the night with Nana and Papa. My earbuds are in and Spotify is rolling. I'm about to write a story. A true story of adventure, fear, anxiety and over flowing love. With a rare ending. One few people experience and fewer still experience in the way that we have. There will be a lot of words. Are you ready? Let's go.

This past Tuesday, April 24, 2012, nearly in the middle of the night, my alarm went off at 2:30am. After only two and a half hours of restless sleep. I got myself ready, then at 3:00am went to rouse The OffSpring. AnnMarie's alarm went off and she bounded out of bed. "We're goin' to New York City!" Curtis came rambling up the stairs. Gregory slept through it all. At promptly 3:30am, Nana and Papa pulled up to the curb. Gregory woke enough to realize that the moment really had arrived. We loaded into the car, with grins, nervous laughter and butterflies in our bellies.

The kids and I were on our way to the airport, flying to NYC. This would be our first time to NYC and The OffSpring's first time on an airplane.

I had been hanging onto this trip since November of 2011. In October, while picking up AnnMarie from school, my phone rang and it was a 206 area code. Recognizing it was Gregory's treatment center in Seattle, I anxiously answered the phone. Wondering if they were going to tell me that our donor wanted us to know who she was. That's what it was. Kind of. Apparently Gregory's donor center wanted us to meet and do some media. They needed me to sign a release form before any plans or information could be shared. This was the phone call that I had been waiting for, ever since we received The Magical Phone Call on April 21, 2009, that we had a matched donor for Gregory's transplant. The form was sent, signed and sent back. Then another waiting game.

November 10, 2011, I received a phone call from Katharina Harf, COO of DKMS Americas. DKMS is the largest bone marrow donor center in the world. Their United States office is located in NYC. They hold an annual fundraising gala. 100% of the proceeds from this event go directly to getting potential donors swabbed and registered for potential matches. Every year at this event they highlight a donor/recipient meet. In order to preserve the authenticity of the meet, the donor and recipient need to remain anonymous to each other until the actual meet on stage, at the event. Katharina had called ask if Gregory and his donor would be the pair to meet for the DKMS gala in April of 2012. Of course I responded with an overwhelming 'YES!'. Aside from close friends and relatives, I have had to keep this under wraps. Not able to share openly what we were getting ready to do! Drove me absolutely crazy to not shout it from the roof tops. Over the next several weeks, I was introduced to the participating member of the DKMS and event planning team. It was decided that a video would be done to show at the gala, prior to our meet. DKMS contacted a local company Seven2 and a local production company ILF Media. They came out to our home and interviewed us on a bright sunny day in February.

Then the waiting really began. The plans were laid. DKMS took care of all the travel, hotel and transportation. All we had to do was show up at the airport in Spokane. The biggest concern, as we waited, was making sure that Gregory remained healthy enough to travel. With the gala being at the end of April, we still faced the reality that cold/flu season could strike and take away the possibility of Gregory being healthy. Considering that his immune system is still not functioning at capacity, he is still receiving IVIgG every four weeks AND the avoidance of Chicken Pox that winter my anxiety over his health was sky high. This was an opportunity I was NOT about to miss. Yet, if Gregory was not well, we would not go. Period. Then there is the anxiety of traveling across the country, on my own, with all three of the kids. Not to mention that we would be in Manhattan. I knew that I could make it work, but wondering and worrying over how we would navigate this grand adventure tore at my gut, brain and heart. I had never been to NYC. Taking the OffSpring somewhere I had been to before would have been so much easier. Not knowing what was ahead was daunting to consider. The days, weeks and months plodded by.

All of a sudden it was 14 sleeps 'til NYC. Then 10 sleeps. Out of nowhere it was 1 sleep 'til NYC.

We are ready! <3

Part II ~ Tuesday

My heart is overflowing.
MindiTheMagnificent
~Momcologist

sound of a cat puking a hair ball

2012-03-14T18:06:00.000-07:00

The log jam has reached capacity, the dam has cracked. Which has, once again, led me to scurry to the keyboard to pound out words.

We had encounter today. One that I have been fearing, yet knew it was bound to happen. Without taking too much time and energy to set up the scene, after having a bit of a melt down, Gregory was on the receiving end of, "Yes, you have been through a lot. Yet you are now six. You need to be doing what other six year olds are expected to do. Work."

I understand where this came from. It doesn't make my heart hurt any less. Yes, chronologically he is six. Nearly seven. Those numbers mean jack-crap for his development. Now, please do not go off half cocked over this encounter. There is no blame or anger to be expressed. It is what it is and it is a reality of how misunderstood his treatment and life after treatment is. This is the perfect example of what I have been trying to prepare myself for as we get ready for him to enter the first grade and public school. There is an element of 'tough love' that is going to come with this next phase of his life and learning. I know that he will not receive Gregory Tailored care and education. As my dear friend pointed out, those of us that are in the thick of this life post a diagnosis of childhood cancer, we don't know what tomorrow will bring. We don't know if Gregory will survive to the age of 35, 19 or even 10. The fact that he is here now is an unexpected outcome. I also do not know what it feels like to be living in Gregory's body on a daily basis. Which can change from moment to moment.

Over the last few months, I've been preparing myself and Gregory's elementary school for his entry this fall. I have no idea what this is going to do to his body and how he will cope. He still has a dysfunctional immune system. He is not able to create antibodies that recognize illnesses and mount a defense when his body encounters an illness. Any illness. One of the scariest things is chicken pox. This past late fall/winter we have been avoiding chicken pox like crazy. There has been a truckload of it in our community. Should Gregory contract chicken pox, it is truly life threatening. Also? He is not able to develop immunity to it. Which means he can catch it again and again. I did not keep track, but he missed 5-6 weeks of school this year, avoiding chicken pox. Which is our only course of action with any infectious diseases. He is currently receiving donor anti-bodies (IVIgG) every four weeks, While this gives him good coverage, it is not complete. He is now 2.5 years post transplant and there is no way of knowing if this is temporary or a permanent state of his immune system. Only time will tell. So, when it comes to thinking about his education and what it might look like for him next year???? A school with 400 first through sixth graders, a full day of school, the excess noise in the classroom (with his high frequency hearing loss) and the toll this will take on his not fully functional little body? Oh yeah... he's still growing and developing, at the same time (we hope), too! That is a lot for one little body to process.

And then..... he's been having gut GVH symptoms and a faint spidery rash on his cheeks, which is probably also GVH. His gut GVH symptoms manifest with nausea, frequent loose stools and his G tube site has been painful. When I think about what it must feel like to have a constantly irritated gut, I just cannot wrap my head around it. As long as he tolerates his symptoms and they are manageable, there is no treatment. The only treatment is prednisone and immune suppressants. Those are not even considered until his symptoms are fairly severe.

Do you know how exhausting this life with Survivorship is? Holy Hannah. We are also gearing up for Gregory's annual long-term follow up (LTFU) appointments in Seattle. He will have his hearing re-tested next week, dental exam and panoramic x-ray the end of March, an eye exam to check his cataracts and we will be looking at his CD19 & CD4 (anti-body) levels to determine if we will be holding his IVIgG for the recommended 8 weeks prior to LTFU. Donor IgG has a 'life' of about 8 weeks in the body. In order to get an accurate status of Gregory's antibodies, we need to hold any infusions for 8 weeks prior to testing. Quite frankly, I do not think his immune response has changed since his last LTFU in June of '11. Holding his IVIgG only puts him at risk of getting sick. Which is exactly what happened during our last LTFU visit.

Among all of this chaos, we are preparing for a trip to New York City in late April. We will be meeting Gregory's donor. There are many details that go along with this that I am not at liberty to publicly disclose. Suffice it to say, we have known about this since November and I am just now mentioning it. I will share all the details when the time is right. (See how I snuck that exciting piece of information deep in a whiny post!)

What this all boils down to: Every stinkin' day of Gregory's life is so complicated. Every stinkin' day is amazing. Every stinkin' day is exhausting and emotion laden. Not every moment, but there is a heaviness to every day. Be gentle with him. The fact that he is still around, three years after diagnosis, is a shining light. The fact that we are not completely broken is miraculous. The fact that we have LIFE is never lost on me. Ever.

Loving you....

Mindi The Magnificent

~Momcologist

ETA: Just to be crystal clear. I am acutely aware of the fact that we are bittersweetly BLESSED to be dealing with these issues. Every time I post a 'bitch session' I cringe. Knowing full well that I have friends who's children have died and they are reading my words. I never forget.

Sticking my foot in it.

2012-02-01T22:58:00.000-08:00

Have a seat. Fasten your seat belt. We are about to experience some extreme turbulence.

Ready?

OK.

Let's go.

46 every week day. 7 every day. 36 every day. 10 every week day. 12,500 a year. 12 different types. 80% 'cure' rate overall. 95% cure rate for Acute Lymphoblastic Leukemia. 1 in 5. 3/4 of survivors. 1 in every 330.

I am so sick of numbers. I am exhausted by the word 'rare'. I could give a crap less about statistics. From the very beginning I was able to wrap my head around the idea that Gregory was a statistic of ONE. One Gregory, one disease, one donor, one life. He had a 20% chance of surviving JMML. A 50% chance of surviving transplant. He has a 100% chance of getting through this as HE will get through this.

Except people want numbers. People want and cling to statistics. A measurable way of asking questions we have no way of answering. Want to know why numbers can't express what we want them to?

The numbers are too small. Childhood Cancer is rare. (I told you it was going to get rocky.)

Not only that, but 'Childhood Cancer' is not a diagnosis.

Still with me? You're brave or masochistic. Either way, your are always welcome.

The numbers we use for childhood cancer statistics come from many different sources. I have yet to see anyone itemize the statistics we use and source the information. Why? It's too flippin' complex. American Childhood Cancer Organization has a decent representation of general childhood cancer statistics.

That 12,500 number we use to indicate number of kids diagnosed with cancer in the United States? It covers 12 different families of cancer. TWELVE. Within the 12, each 'family' of cancer has several different types/mutations.

According to BeTheMatch.org, about 2,700 of that 12,500 is ONE diagnosis within the leukemia family. Acute Lymphoblastic Leukemia. A disease that has a 90-95% survival rate. Depending on where you look. ALL (using these numbers) accounts for over 21% of all childhood cancer cases. That is a very large number of ONE diagnosis. Yet it is a very small number of individual diagnosed cases.

The rest of the types of cancer? I do not have those stats on hand. I do know this. Gregory's cancer, Juvenile Myelomonocytic Leukemia (JMML), there are 25-50 cases of JMML diagnosed every year in the United States. I'm sure many of my friends could quote the incidence of their kiddos cancer. If you can, PLEASE drop a comment with the info, also the citation, if you know it.

As a comparison:
Breast Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)—202,964 women in the United States were diagnosed with breast cancer.
Lung Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)— 203,536 people in the United States were diagnosed with lung cancer.
Prostate Cancer: According to cdc.gov: In 2007 (the most recent year numbers are available)—223,307 men in the United States were diagnosed with prostate cancer.

Three diagnoses, over 625,000 cases. Versus 12,500 cases of 12 different types of childhood cancer. Granted, adult cancers are typically due to aged cells, lifestyle, environmental/chemical exposure. Kids don't smoke, drink and are well, are kids. Young.

The childhood cancer community can't compete with these kinds of numbers. Childhood cancer, as a family of diagnoses, is rare. Not to mention the tiny numbers of each individual diagnosis. It certainly does not feel rare when it happens to you. It does not feel rare when each one of our members has a plethora of families that we follow, fall in love with, laugh with and grieve with. It does not feel rare when 46 Mommas are together, in one place, shaving their heads for childhood cancer research. It does not feel rare when your child dies. It hurts, it's fearful, it's full of anxiety. It permeates every cell of your existence.

I will say this about the word rare. DO NOT use it to dismiss the childhood cancer community. Ever.

What does all this mean to me? It means that we, the childhood cancer community, is truly a grassroots community. Yes, we do have friends and supporters that are not immediately touched by childhood cancer. By and large, the blood, sweat and tears of fundraising, advocating and raising awareness of childhood cancer is done by us. The 'users'. We are a passionate, motivated and dynamic group. We are also exhausted, weary, depressed, anxious, fearful..... We are tired. Yet we keep on, keeping on. While it would be grand to have the same support that some adult cancers have, quite frankly I don't want to see those kinds of numbers of diagnoses in order to garner that kind of support.

Over the past three years I have had to decide WHERE to place my allegiance. Where do I put my time and energy to get the most bang for my buck? I SHOULD support the JMML Foundation. Yet I came to the conclusion that my fundraising time would be best spent supporting a broader scope of childhood cancer research. (Talk about a tough decision to make.) Which is why my charity of choice for funding childhood cancer research is St Baldrick's. I offer my time, my heart and my experience to the JMML Foundation. Locally I support our chapter of American Childhood Cancer Organization. ACCO Inland Northwest. Kinda spread thin, yes? Don't forget that I have three kids, one of which is living post a diagnosis of cancer and a bone marrow transplant.

Can you see why childhood cancer families are tired? Can you see why we might be mad, from time to time. Can you see how the word 'rare' might bring out some ire? We are a fierce bunch. Yet, we are rare.*

With limitless love.....
~MindiTheMagnificent
Momcologist

*The opinions expressed in this blog entry are not necessarily the opinions shared by the childhood cancer community. These opinions only belong to the writer of this blog. Any implication is unintended and not meant to be disrespectful of others' opinions.

ETA: I kid you not. This song was playing as I hit 'publish'. HAD to include it, along with the lyrics below.

They say that these are not the best of times,

But they're the only times I've ever known,

And I believe there is a time for meditation in cathedrals of our own.

Now I have seen that sad surrender in my lover's eyes,

And I can only stand apart and sympathize.

s.html ]

For we are always what our situations hand us...

It's either sadness or euphoria.

And so we argue and we compromise,

And realize that nothing's ever changed,

For all our mutual experience, our separate conclusions are the same.

Now we are forced to recognize our inhumanity,

Our reason co-exists with our insanity.

And though we choose between reality and madness...

It's either sadness or euphoria.

How thoughtlessly we dissipate our energies

Perhaps we don't fulfill each other's fantasies.

And so we'll stand upon the ledges of our lives,

With our respective similarities...

It's either sadness or euphoria.

American Cancer Society Blog on Bald Barbie

2012-01-20T21:46:00.000-08:00

I'm simply pasting the original blog post from American Cancer Society's blog. The apology was issued on the original blog post and the original post was erased.

The apology and the childhood cancer community's reaction can be found here:
Bald Barbie Demand is an Over-Reach - UPDATED

This was Mr Becker's original blog post.

Bald Barbie Demand is an Over-Reach

You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,

“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”

To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.

In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.

We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?

The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.

This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.

Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.

My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?

Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who neeed it.

"Baby needs a new pair of shoes!"

2012-01-12T22:36:00.000-08:00

I have no idea where this will go. I never go back and edit my writing for content. I'm just going to let it flow and see where it takes me.

Support, statistics, advice......

HOW do you have these conversations with friends, family, new acquaintances? We are quickly coming up on our three year diagnosiversary. I feel like I have 'done' my big splashy Momcologist soap box stuff. I've networked like crazy, met some amazing people. Have developed relationships with many and have immediate connections with a handful. I've checked out the foundations, learned about the resources, can quote the facts and statistics like they were the birth dates of my children. I can talk about this experience with a steady voice and rattle off Gregory's timeline as if we were talking about a grocery list.

Then.
Someone very close to me has a niece diagnosed with cancer.

Then.
Three new JMML families enter my life within a week's time.

Then.
I'm watching. Witnessing. As a local Momcologist is saying Good Bye to her son.

Then.
I'm LIVING my life, with a SURVIVOR. Who, at this moment, is surviving and thriving. Who you would look at and NEVER know what he has been through.

On many occasions, it has been suggested that WE are the reason Gregory is doing as well as he is. I've even believed this, for quite awhile. Believed that the only reason Gregory is doing as well as he is, is because I took every single possible precaution I could. Protected that child up one side and down the other. I think I had to believe that. At least for awhile. I had to control something. Yes, the precautions we took certainly improved his chances. Yet......

Every single step is unknown. I'm not going to be able to put this into words that my heart is screaming to express. By saying/believing that what 'I' did is the reason Gregory is surviving there must also be a reverse thought. So..... my friends kid did not survive because 'SHE' did not do A, B & C? Chew on that for awhile.

My very dear friend, Susan Heard, Momma to David has this to say about it: "Science failed David."

Yes. Our science can only go so far.

How do you offer words of support to newly diagnosed families. I can only share our experience. I find myself using a lot of disclaimers along the way. Clarifying that we are not special. That we did not have a magic bullet. That we did not have 'the' doctors and treatment center. Trying to convey the fact that we did NOTHING special.

At this moment in time: WE ARE LUCKY. Plain and simple. I don't have secret wisdom to impart. I only have a heart that is open and willing to sit with yours. I have enough distance to be able to share our story, take yours in and lean into you. We still have a very long row to hoe. In this moment, I feel like we have a break. A time to take a breathe, survey our surroundings, enjoy the wellness of our family. This is not done without great respect for what is behind us and what we have yet to face. We are also acutely aware of the mysterious 'What ifs......"

I can only offer what I have in my toolbox. I have patience. I have experience. I have pragmatism. I have love. I don't have magic bullets. I don't have shortcuts. I don't even have band-aids. (I don't believe in them.) If you come to me, I will offer what I think you need. I will gently test your limits, checking where you are and how best I can serve. I will ALWAYS be truthful. Sometimes painfully so. I will NEVER sugar coat. I will NEVER offer false hope. Ever. I will ask you to SURRENDER. If we are not a good fit, you are under no obligation to continue a relationship with me. If we are a good fit, I will always be here for you. Just because we both have kids with cancer.......... it does not always work. I will go with you to those dark places. I will hold your hand as we walk those terrifying paths. You will never be alone. Lonely? Probably. Alone? Never.

Crap shoot, folks. Childhood cancer is one big Crap Shoot. Don't ever forget that. You cannot pray enough, wish enough, find the right doctor, find the perfect treatment center, get into that one trial. Nothing is certain. No one is responsible. It's the luck of the draw. It's throwing the dice: "Baby needs a new pair of shoes!"

So freaking grateful we are currently holding a long straw.
~MindiTheMagnificent
Momcologist

PBS Share Your Photos: Childhood Cancer Awareness

2012-01-12T18:12:00.000-08:00

The Greginator ~ Juvenile Myelomonocytic Leukemia
Diagnosed 2/25/09 ~ Bone Marrow Transplant 6/11/09
No Evidence of Disease ~ Surviving
www.mindithemagnificent.com

This is for PBS' Share Your Photos: Childhood Cancer Awareness

Photos are also being grouped together on Pinterest.

Listen To Your Mother SPOKANE Auditions!

2012-01-08T20:33:00.000-08:00

ATTENTION SPOKANE WRITERS:
AUDITIONS

We seek Spokane writers to read their original essays on any aspect of motherhood in the second annual LISTEN TO YOUR MOTHER Spokane show at the Bing Crosby Theater on Mother’s Day, Sunday, May 13, 2012.

People of all ages, types and backgrounds and writers of all experience-levels are invited to audition. Although mothers are welcome, you need not be a mother to audition. We encourage diverse perspectives on the subject of mothers or mothering.

Auditions will be held on Saturday, February 25 by appointment only.

LISTEN TO YOUR MOTHER is a community-oriented celebration of the beauty, the heartbreak, the trials and triumphs that are MOTHERHOOD directed and produced in Spokane by local moms, writers, and bloggers Stacey Conner and Elise Raimi. No previous stage experience is necessary. Bring your original, humorous, poignant, painful, joyful and soulful words on mothers or mothering. Previously published work accepted as long as the author retains full rights or has express permission to read the work for this event.

Commitment for cast members includes two group read-throughs in April, a pre-performance run-through at the Bing Crosby Theater and one 7:00 p.m. performance on Mother’s Day.

To schedule a February 25 audition, email: listentoyourmotherspokane@gmail.com Please include your name and your availability for an appointment. (Please also email us with questions or if you are in need of encouragement!)

We would love to listen to your words. Come and audition and help us to continue this Spokane Mother’s Day tradition.

National site: www.listentoyourmothershow.com

Compassion, Connection, Courage

2012-01-01T23:57:00.000-08:00

It's the opening that is sticky. What words should fly off these fingers to hook you and make you want to finish reading the entry?

Writing through Gregory's diagnosis and first 18 months post transplant was easy-peasy. While it was all about my emotions, it was about my experience with Gregory. These days I want to write about ME. These days my 'me' is not entirely consumed with Gregory. There is nothing acute to report, no earth shattering late effects. Which means I shy away from sharing anything. I'm stuck in this place of wanting to rejoice in Gregory's sense of 'wellness' and not wanting to disrespect or down play what our new reality is. So........

I write all day long. In my head. Brilliant, well phrased entries. Full of thought provoking content. Though not a single one of them have an adequate opening. Stupid Virgo brain wants a beginning, a middle and an end.

This is the time of year when everyone feels a knee jerk reaction to reflect and resolve. I find it rather creepy. These things should be done daily. Nothing big. Nothing too heavily life changing. Yet, those small moments, daily, bring on a greater life to live. Not too long ago I heard about Brene' Brown. A dear friend loaned me one of her books and I just was not into it, at the time. I happened to catch one of her Ted videos and I was blown away.

I got kind of geeked out after watching this video. She is a researcher. Data, data, data. Totally up my alley. The concept of living Wholeheartedly and vulnerability. Basically it comes down to three words/concepts.
Compassion, Connection and Courage. These three words have been showing up in my life constantly since then. An awareness that YES..... these are the three words that I want to define my life.

Now that I have the essence, it's time to make some hardish choices and decide what I want in my daily life. What I want to invest time in. I have a loooooooong list of things I want to do. Yet, none of them are a goal. They will happen when synchronicity and providence happen at the same time. By continuing to live the three C's I am confident that things will fall into place. Yes, I will slip and slide. Yes, I will snap. Yes, unexpected events will continue to happen. The difference today? I have a strong personal/emotional foundation.

Now the mundane:

I started practicing Ashtanga Vinyasa Yoga in November. I am in love. More later, it deserves an entry all it's own.
Gregory starts speech therapy on Wednesday (January 4). While I know he really needs it, I will grieve the loss of his precious voice and pronunciation.
AnnMarie received two Guinea Pigs for Christmas. *swoon* They are the bees knees and I can't decide if she enjoys them more than I do. They are a true family gift. Even Curtis, the 13 year old, turns to mush when he interacts with them. Which is more often than one would imagine.
I started my first custom, fitted sweater for myself. (Knitted, of course!)
We have had sporadic cases of Chicken Pox in our 'hood. Gregory's immune system is still not fully functional and this makes me twitchy.
Gregory 'graduated' from physical therapy!
Curtis made honor roll for his first quarter of middle school.
AnnMarie and I have been *squeeing* together over Glee. Why is this significant? There is so much joy in that little show for she and I. Joy that I was not ready to let in. It's getting in. It is JOYFUL!
I'd really like to volunteer at our local American Childhood Cancer office, but this is just not looking like this is the year. Hopefully next year when Gregory is in school full time.
I'd like to partner with someone who can help me develop and publish a planner/calendar for families with medically needy kids. Know anyone? Send them my way!

Moi. 366/2012 ~ Day 1

I'm doing a photography project. One picture of me, everyday for 2012. If you know any way to do a nifty grid of images for this blog? I'd love the inside scoop.

I discovered an amazing little organization this week. They are called Peach's Neet Feet. Peach custom designs and hand paints shoes for kiddos with life threatening health conditions. Her creativity and heArtWork are drop dead gorgeous. There is no doubt that she breaths every ounce of love that she possess into those creations. Check 'em out. They are on FaceBook, too. She is always looking for someone to sponsor a pair or two of shoes for kiddos.

‎"Each night, when I go to sleep, I die. And the next morning, when I wake up, I am reborn."

~Mahatma Gandhi

As always, from my heart to yours.....
MindiTheMagnificent
~Momcologist

Hair grows back. Kids don't.

2011-12-29T23:09:00.000-08:00

Guest post for Peach's Neet Feet. What an amazing organization, supporting kids diagnosed with cancer. Love them!!! Love, love, love....

"I personally look forward to the day when, overcoming the number one disease killer of children, will be a national health priority everyday of the year - not only in September." ~ Kathleen Ruddy, Executive Director, St Baldrick's Foundation

Every weekday in the United States, 46 families hear these words: "Your child has cancer."

Wednesday, February 25, 2009, our family heard these words. Our youngest, Gregory, was diagnosed with Juvenile Myelomonocytic Leukemia. At the tender age of three. His only option for survival was a bone marrow transplant.

From that fateful day forward, I have networked, read about, learned about, talked with, met and learned from family after family after family affected by childhood cancer.

I have experienced and witnessed the devastation that this diagnosis brings to families and their children. Every ounce of your existence is shattered. Bringing you to places you never thought you could/would go.

Watching the barbaric ways we treat cancer in our children. Experiencing the isolation that this diagnosis and treatment brings. Breathing through wave after wave of anxiety as each day, week, month passes.

When Gregory was first diagnosed, my knowledge of cancer was cursory. My thoughts were: "A little bit of chemo and you're good." Oh how wrong my naive mind was.

These kids experience months and years of toxic therapies. Chemotherapy may rid a child's body of cancer, but did you know that it also causes cancer? Did you know that radiation causes cancer? Did you know that these kids face life long complications?

People Against Childhood Cancer

One in five children/teens diagnosed with cancer do not survive.
Three of the four survivors face at least one life-long, chronic, life threatening condition.
These children are frequently left infertile.
They face neurological and developmental deficits.
Growth Failure
The average life span for a childhood cancer survivor is 30 years post diagnosis.

The list goes on and on and on. While my son, Gregory, is surviving, it has come with a significant price tag.

I am one of the 46. I am one of 46 Mommas Shave For The Brave.

In September of this year (2011), I joined 45 other Momcologists (Mothers of children diagnosed with cancer), at Union Station, Washington, DC. The 46 of us shaved our heads for childhood cancer research and awareness for The St Baldrick's Foundation. We have been tirelessly raising awareness and fundraising for St Baldrick's to fund life saving childhood cancer research. As of the time of this entry, we have raised $333,200 for St Baldrick's in 2011.

Shave for the Brave from SocialStudiesDC on Vimeo.

Going bald for childhood cancer research is the easiest thing I have ever done.

"Hair grows back. Kids don't."

MindiTheMagnificent Before

MindiTheMagnificent After! Notice that grin? Yee haw!

Namaste
MindiTheMagnificent
~Momcologist

The Greginator, today. 2 1/2 years post Bone Marrow Transplant.

I say YES to LIFE.

2011-11-21T19:35:00.001-08:00

I give myself TOTAL PERMISSION TO FOLLOW MY HEART
to listen to my desires
to love myself completely
to make myself happy & joyful
to be deeply fulfilled
and live in purposeful ecstasy.

My body is an Open & Receptive temple for Divinity, Joy, Bliss, Fulfillment & Soulful Purpose to embody within.

I give myself COMPLETE PERMISSION to turn myself on
to bathe in love
& to embody the grace & wisdom of feminine divinity.

I am an activated Goddess overflowing with an abundance of Love, Joy, Bliss, Self-Love, Wisdom, Life Force Energy & Soulful Healing Creativity.

I say YES to Fulfillment
I say YES to Heart Wisdom
I say YES to Authentic Desire
I say YES to Joy
I say YES to Creativity
I say YES to Sensuality
I say YES to My Soul's Purpose
I say YES to Sexuality
I say YES to Abundance
I say YES to Freedom & Liberation
I say YES to LIFE.

<p>&amp;amp;amp;lt;p&amp;amp;amp;gt;&amp;amp;amp;amp;amp;lt;a href="http://wahkeenasitka.bandcamp.com/track/total-permission"&amp;amp;amp;amp;amp;gt;Total Permission by Wahkeena Sitka&amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;gt;&amp;amp;amp;lt;/p&amp;amp;amp;gt;</p>

NaBloPoMo.......crossing fingers

2011-11-02T23:35:00.000-07:00

I recently mentally committed to doing NaBloPoMo this year (again!). I've never completed a NaBloPoMo and this year started out no differently. I realized November had begun and a post was due around 10:00 the evening of the first. Oops!

There is lots going on and much to write about, I just have not had the discipline to sit and write. Frankly I have not had the discipline to do much, as of late. Still digging myself out of a slump and trying to 'live' this life we now have. Gregory's health has been incredibly stable *knock wook*. He has been receiving IVIgG every four weeks and has yet to catch a respiratory or viral illness. Granted his exposure has been kept to a minimum. At his last clinic visit his Doc and I discussed whether or not his antibodies would return if he was never sick. Meaning.... how can we challenge the function of his antibodies if he is not exposed to anything. Which means that we have loosened the reigns even more. Since that visit two weeks ago, Gregory has played mid-day at a McDonald's Play Place and been to two LARGE school functions for AnnMarie's elementary school. Plenty of exposure in those three events and he has not developed any cold/flu symptoms. At his next visit on the 17th, we will also be taking another look at his IgA and IgM levels. Which can help to create a better picture of what might be happening with his immune system. I'm not expecting anything to be different that it was in June. The support he is receiving with monthly IVIgG is working to keep him out of the hospital and symptom free. I can't ask for much more than that. He has been free of immune suppressant drugs for three months. Over that time frame his eosinophils (another cell among your white cells) have been slowly creeping up. These cells indicate inflammation in the body. This could indicate that Gregory is getting ready to have a GVH flare. 'Could' being the operative word. Which does not mean I'm casual about it. I've read too much on GVH and heard account after account of patients that have really bad flares between years 2-5. With GVH it can strike the body anywhere. Not just where Gregory was originally afflicted. With many areas of the body, if GVH strikes, the damage done is irreversible. Catching and treating it early is key. I may be a little hypersensitive about monitoring him, but irreversible organ damage is not something I want to have happen. Just another piece of vigilance.

I am a wee bit over committed. Over committed mentally, but certainly not physically or time wise. In order to help settle my heart, my mind and my body I've taken up the practice of Ashtanga Yoga at Spokane Yoga Shala. I am loving it. It is bringing me an awareness of my body and how I have carried these last several years worth of stress and anxiety. Could not be happier with the studio and it's instructors either.

We are very lucky to have an amazing pediatric palliative care team at Sacred Heart Children's Hospital called the Sunflower Program. They hold a pediatric palliative care conference in the fall and this year's conference is Thursday night and Friday. As an involved parent, I was asked to share our story with the conference attendees. This conference is for doctors, providers of care, nurses and patient families. I attended last year and it was a great event. Below you will find our story that will be shared on Friday. This is just a snippet of our story, but hopefully it expresses to the audience how our family fits within the palliative care community.

I've been asked on several occasions to share our story. This is the first time I have tried to convey our story in a public setting. If I were to sit down and write our story, it would be many pages long. One day I will. I will write a narrative of our timeline. For now, I am sharing the bits and pieces that are applicable to the audience that will be hearing it. Which is sometimes very hard to figure out what the focus and intent is of sharing our story. This seems to be my biggest hurdle. Yet, once I have a point to focus on, the words flow.

Hopefully I'll be back to share something tomorrow. It would be very rewarding to blog everyday for a month. I know my brain could use it.

As always, love, love, love....
Mindi
~Momcologist

In June of 2005 we welcomed our last child to our family. Gregory Miles Bibb. He was preceded by AnnMarie in 2002 and Curtis in 1998. We were now a family of five. Each member of a family has unique attributes. Gregory's are light and grace. He truly is the light of our family.

In February of 2009, Gregory developed a resistant cold which lead us to an emergency room visit for IV fluids. Gregory did not respond to IV fluids which resulted in a CBC. With this one simple blood test, our lives were rocked to their core. Gregory was eventually diagnosed with Juvenile Myelomonocytic Leukemia, at the tender age of three. The nature of his disease meant we would go immediately to bone marrow transplant. Do not pass go, do not collect $200. Chemotherapy alone will not destroy this disease. We began the bone marrow matching process to see if the siblings were a potential bone marrow match. They were not a match and we spent six of the LONGEST weeks of our lives, anxiously waiting for the phone call that would notify us of the possibility of saving Gregory's life. The magical phone call came on April 21, 2009. We had a 10/10, 23 year old female match. Gregory's work-up was scheduled to begin May 12, 2009 with transplant on June 10, 2009. In the meantime, he had been receiving daily, oral, low dose chemotherapy to keep his disease at bay. He also received supportive platelet and red cell transfusions. We were in clinic no less that twice a week. With a handful of admits thrown in for respiratory infections.

Bone marrow transplants are not available in Spokane. Gregory and I left Spokane on May 11, 2009 and traveled to Seattle, Washington. Seattle Cancer Care Alliance, Seattle Children's and Seattle's Ronald McDonald house became our home for the next five months.
Due to the intensity of treatment with a bone marrow transplant, we were introduced to the idea of palliative care at our first conference with the team at Seattle Cancer Care Alliance. Seattle Children's Mark Power was an integral part of our BMT team and our stay at Seattle Children's. I am forever grateful for the role that Mark played in Gregory's transplant experience. During our stay in Seattle Gregory spent 12 plus weeks inpatient. Living in the hospital became a way of life.

We returned to Spokane in October of 2009. Gregory remained incredibly medically fragile. During Gregory's first year post diagnosis, we spent over 26 weeks inpatient. One thing Gregory's team of medical care providers helped us to understand is the concept of 'living' in the hospital, instead of just 'staying' in the hospital. While having to be inpatient is a bummer, we have completely surrendered to the fact that when he is inpatient, it is where he needs to be.
This Odyssey has changed our family and our lives. Each and every one of us. When a child is diagnosed with a life threatening condition, the entire family is diagnosed. Gregory currently has no evidence of his original diagnosis of JMML. Yet, his health status is complicated and incredibly complex. Due to the intensity of his treatment and his tender age, we know not what tomorrow will bring. Each milestone is anticipated with bated breath. Each clinic visit, every 28 days, brings a sleepless night before and nagging thoughts of "Has it returned?".
The greatest myth about childhood cancer is that we will one day be 'done'. I tell people, 'Like dishes and laundry, childhood cancer is never done.' Thankfully we are part of a very strong community, not only childhood cancer families, but families that have life changing medical diagnoses with their children. The richness of this community is what keeps me engaged, supported and validated. With ever so faint glimmers of hope.

"We may not live in the past, but the past lives in us." ~Samuel Pisar, Holocaust Survivor

October 2011 ~ The Greginator

Look what I did......

2011-10-18T14:30:00.000-07:00

Many thank yous to Buck from Birds Eye Tattoo in Spokane, WA.

46 Mommas ~ The Event

2011-10-16T16:04:00.000-07:00

I've been wanting to write about my week in DC and 46 Mommas. I'm pretending that I have a clear mind and a clear vision of what I want to convey..... Ha!

First and foremost, DC blew my mind. I'm not a well traveled being. This was my first trip to DC and my first real glimpse into the colonial beginnings of our country. The entire five days that I was there, I kept thinking.... "Am I really here? Is this really happening?" The days flew by in a frenzy. So much going on, so many people to meet. I only had time to meet/talk to a fraction of the people that I wanted to.

I have been spending quite a bit of time on the 'why' of shaving my head. Yes, having the opportunity to meet these amazing women, their families, their friends and the people who support childhood cancer families was a thing I could not pass up. Seeing these faces in the flesh, instead of words/images on a computer screen was amazing. These are people who understand what we have been /are going through without me having to say a word. These people that kept me connected during months of isolation. We came together to do something even more important, though.

I went to DC to work. I only realized this as the events began to unfold. I came home with an ownership of what we did and why. I came home with the realization that, YES, I can make a difference.

The work that we accomplished is multi-layered. The obvious and sometimes overlooked main point, was to raise money for the St Baldrick's Foundation. In order for them to fund childhood cancer research. This is my number one charity for supporting childhood cancer research. I've spent many an hour thinking about this decision. Gregory's cancer is very uncommon. 25-50 cases diagnosed in the US every year. We are fortunate to have a foundation to support Juvenile Myelomonocytic Leukemia. The JMML Foundation. They do fund research specific to JMML and I have gone round and round in my heart, thinking about how to support them. They also support JMML families. At this point there are two roads of 'treatment' for JMML. One is stem cell transplant. The other is if the kiddo also has Noonan's Syndrome and the JMML stabilizes. Strange, I know. Right now, I feel that my support of childhood cancer research through St Baldrick's is going to yield a higher benefit ratio for the childhood cancer community. Which does not mean I've left our foundation out of the picture. I just have yet to figure out how I will support our community in a meaningful way. I must admit that my fundraising efforts for my personal goal fell very short. I have never done anything like this before and this experience taught me a lot about fundraising in general. I do know that although my dollar amount is low, this is not the only time I will participate. I also know that our combined efforts have created life-long supporters of St Baldrick's. Which is just as important as my individual efforts.

Memorable moment:
Early Wednesday morning a few of us headed over to Union Station to check out the site, hang hope flags

and talk to the production company. The event was in the Main Hall of Union Station and we had a beautiful 7'x8' banner hung between two pillars, right where the stage was set up.

As we were milling about a woman approached us, practically in tears. She then told us this....she was on her way to work, had a late night and was heading to get a coffee in the station. Something she does not customarily do. She noticed our banner, saw the awareness ribbon out of the corner of her eye. Thinking it was a pink ribbon she initially didn't give it a second thought. Then it struck her. The ribbon was GOLD. Gold for childhood cancer awareness. She came over to check out what was going on. Then her story was revealed. Her son just past one year post-bone marrow transplant for relapsed ALL. Her emotions over finding the gold ribbon in Union Station was overwhelming. For all of us. We walk through our days, feeling all consumed by this thing, CANCER, that has appeared on our doorsteps. Yet terribly isolated. This small encounter let this mom know that she is not alone. She matters, her child matters, their family matters. Childhood cancer matters.

The shave itself was emotional. Chaotic. Three hours flew by in an instant. Not too long before the event, I had reached out to a fellow JMML family. They live in Arlington, VA which is not far from DC. I was hoping that we could meet while I was in DC. The Barnes family came up to DC for the event. Not for the event, but a chance for us to meet. Kelli is heavily involved with the JMML Foundation and it was so great to sit down with her and her husband. They also had their two little guys with them. They are a family who do not have a JMML survivor. Kamran was not with us, but was very much with us, as we talked about this disease and this experience. They are a great family and I feel so very lucky to have been able to sit down with them.

Dr Peter Adamson was one of our key note speakers. He is the chair of Children's Oncology Group. He also spoke at the PAC2 workshop on Thursday and the Childhood Cancer Caucus Summit on Friday. I know I keep using the word amazing, but it just fits. He is devoted and inspirational.

This video was put together by Social Studies DC. They were able to grab the highlights of the night and the nuggets. Can't tell you how awesome this is.

Shave for the Brave from SocialStudiesDC on Vimeo.

"I personally look forward to the day when, overcoming the number one disease killer of children, will be a national health priority everyday of the year - not only in September." ~ Kathleen Ruddy, Executive Director, St Baldrick's Foundation

Our professional barbers for the night were from PR at Partners. They were phenomenal. In fact, one of the stylists was so moved that she sat down in that chair and shaved her head, too. From many of them we heard that this event was one of the most powerful things they had ever been a part of.

We even had a post-shave glam station! We received mini make-overs to help us feel pretty in our first hours of being bald. Votre' Vu was our make-up sponsor and it was FUN! I know for myself, I felt flippin' stunning the whole night. THANK YOU! (It was amusing to discover that these high-end make-up artists use the same brand of mascara as I do. The classic pink & green tube of Great Lash!)

Since that brief experience in the barber's chair, I have never felt so beautiful. Listen To Your Mother helped me to reclaim my strut. 46 Mommas helped me to reclaim my beauty. It's the first time, ever, I have felt truly comfortable and willing to be in front of a camera. Strange, but I'll take it.

I'll have to share more later. For now here are some pictures from the event. Courtesy of:
Tim Coburn Photography
Julie Stewart Photography
Shay Holman, Elite Image Photography
Cipriana Thompson, Soulfully Speaking
Margaret Walker
Michael Crane
Manibu Yoshinaga
Dari McManus
Greg Blakey Photography

More photos can all be found on our 46 Mommas website under Multimedia, listed by photographer.

The fundraising year is not over.....we have through the end of 2011 to reach our goal. As of today, our event has raised $320, 225. We are number 5 for St Baldrick's top events. It would be awesomesauce if we could bump even higher! No donation is too big or too small. If you are a family that gives to charities for the holidays, please consider this one. I'll be asking again as we get closer, just wanted to start planting seeds.

My personal goal is $5,000. I've currently raised $2,445. Which is not even half way. Here's my participant page.....Momma MindiTheMagnificent. Thank YOU!

As always.....love, love, love. Fierce Momma Love!
MindiTheMagnificent
~Momcologist

46 Mommas National Press Release

2011-09-15T11:21:00.000-07:00

Via: http://46mommas.com/

46 Mommas: Shave for the Brave 2011 St. Baldrick’s Foundation Head-Shaving Event to Help Conquer Kids’ Cancer!

Press

BALD MOMS MAKE A BOLD STATEMENT DURING CHILDHOOD CANCER AWARENESS MONTH

Download this press release in PDF format.

LOS ANGELES (September 13, 2011) — It takes 46 Mommas in Washington, D.C., to Conquer Kids’ Cancer! The St. Baldrick’s Foundation, a volunteer-driven charity dedicated to funding childhood cancer research, announces the second annual 46 Mommas: Shave for the Brave event taking place at Union Station in Washington, D.C., on Sept. 21. In addition to the 46 Mommas, NBC Washington's, Angie Goff, will emcee and serve as a celebrity barber for the event. Each of the 46 Mommas has heard the dreaded words “Your child has cancer,” and decided to get bald during September in recognition of Childhood Cancer Awareness Month.

Why 46? Because on average, each weekday 46 families receive the news that their child has cancer. Comprised of 46 mothers from across the U.S., the 46 Mommas are on a mission to raise awareness and funds for life-saving childhood cancer research and inspire others to join in the fight toConquer Kids’ Cancer. By shaving their heads in solidarity with not only their children, but every child affected by cancer, the 46 Mommas hope to raise $1 million. Having raised more than $319,700 this year for kids’ cancer research, the group has already surpassed last year’s event total.

“To see 46 mothers come together to take a stand against a disease that threatens their children’s lives, is powerful,” says Kathleen Ruddy, executive director for the St. Baldrick’s Foundation. “Although they are from all walks of life, they share in an experience that will bond them forever, fighting childhood cancer. They have directed their energy toward a positive endeavor and have been triumphant in their efforts to raise awareness and funds for childhood cancer research. St. Baldrick’s is honored to have the support of the 46 Mommas.”

The 46 Mommas are honored to have several sponsors supporting their efforts. Champion level sponsors include BIO, Granted Peace Services, Inc., Inspire, PR at Partners Salons and Spas, Tim Coburn Photography, von Elling Imageworks and KPMG LLP.

Do your part to support the 46 Mommas and St. Baldrick’s! To locate or organize an event in your community,sign-up to shave, donate or volunteer, visit www.StBaldricks.org. You can also become a fan on Facebook, follow us on Twitter, join our letsCONQUER movement and visit the St. Baldrick’s YouTube and Vimeochannels.

About the St. Baldrick’s Foundation

The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. The Foundation funds more in childhood cancer research grants than any organization except the U.S. government. St. Baldrick’s funds are granted to some of the most brilliant childhood cancer research experts in the world and to younger professionals who will be the experts of tomorrow. Funds awarded also enable hundreds of local institutions to participate in national pediatric cancer clinical trials, a child’s best hope for a cure. Since the Foundation’s first grants as an independent charity in 2005, St. Baldrick’s has funded more than $76 million in childhood cancer research. For more information about the St. Baldrick’s Foundation please call 1.888.899.BALD or visit www.StBaldricks.org.

About the 46 Mommas

We ARE 46 Mommas on a mission to raise awareness, raise funds for research and inspire others to help fund a cure for childhood cancer.

Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer. The number 46 is significant. On average, each weekday, approximately 46 families receive the news that their child has cancer. Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.

Support the 46 Mommas by visiting the 46 Mommas event page or website and become a fan on Facebookor follow them on Twitter. Contact the 46 Mommas at info@46mommas.com.

###

Meet The Mommas & Our Honored Kiddos

2011-09-12T11:57:00.000-07:00

We still need you, though. "Many hands make light work." The 46 Mommas have issued a $10 Challenge. Via our FaceBook fan page:

"Take our 2-Weeks-to-go-$10-challenge! Help us get closer to our goal of $1Million for St. Baldrick's. If each 1 of our fans donates $10 we'll be $95,630 closer to helping fund lifelong cures! Can you skip 2 coffees this week? Pass on a trip to the movies? Or brown bag lunch? Donate the $10 you save to our event (or the Momma of your choice) to help CONQUER kids' cancer!"

Love, love, love...

Mindi

~Momcologist

People Against Childhood Cancer (PAC2) Update ~ September 2011

2011-09-09T10:46:00.000-07:00

Such vital information to share. Not my words. Just getting the word out.
Mindi
~Momcologist

PAC2 Update ~ September 2011

Welcome to National Childhood Cancer Awareness Month.

Here's to a day soon when it's not needed. Until we get there we fight on and we see hundreds of events and efforts by the entire childhood cancer community going on this month. Today we'd like to share some news about events in Washington DC this month, along with great news about a cooperative and collaborative effort by the community.

National Public Service Announcement

Numerous national childhood cancer organizations and dozens of local and regional ones have taken unprecedented steps to collaborate and support the production of a radio Public Service Announcement and the KidsCancerFight.org website. The PSA is running nationwide during the month of September! This project developed from the PAC2 Workshop in March 2011 organized to bring the childhood cancer community together to identify collaborative ways to make the work of childhood cancer organizations more efficient and effective. In the Workshop the membership group (consisting of over 30 childhood cancer organizations) elected to develop a national PSA for use as a call to action in the fight against childhood cancer. The PSA (listen to 8 year old Tony here courtesy of Alex's Lemonade Stand Foundation) encourages listener's to visit the website KidsFightCancer.org where they can browse and connect directly with numerous national and local childhood cancer organizations. Please share!

Childhood Cancer Awareness Month

President Obama declared September National Childhood Cancer Awareness Month, as you likely know. Childhood Cancer Awareness Month represents an annual opportunity for supporters nationwide to focus on and bring awareness to the challenges of childhood cancer. This year, there will be a series of events taking place in Washington, D.C. to help achieve our common goal to eliminate childhood cancer. Our organizations have come together to coordinate efforts, educate lawmakers, and ensure that our voices are heard in the nation’s capital.

Visit Childhood Cancer Awareness Month - Washington DC Activities to read more about the efforts of St. Baldrick's, 46 mommas shave for the brave, Children's Cause for Cancer Advocacy, Hyundai Hope on Wheels and the Fall 2011 PAC2 Workshop!

46 mommas shave for the brave

These ladies, moms of children effected by childhood cancer, stood proud and bald in front of a national television audience on the Stand Up To Cancer broadcast last Fall. This team supports the efforts of the St. Baldrick's Foundation, and has a long history here at PAC2! This year they are shaving at Union Station on Wednesday, September 21! Visit 46mommas.com to learn more about these incredible moms.

Creating Hope Act

On Thursday, September 22nd, Congressman Michael McCaul (R-TX-10) and Congressman G.K. Butterfield (D-NC-1) will be introducing the Creating Hope Act in the House of Representatives. If passed, this bipartisan legislation would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers. Senators Bob Casey (D-PA) and Scott Brown (R-MA) have introduced a companion bill in the Senate. Read more about the Creating Hope Act.

Childhood Cancer Summit

On Friday, September 23, 2011, the Congressional Childhood Cancer Caucus will host the second Childhood Cancer Summit on Capitol Hill. The event will feature a panel of experts speaking on the challenges and opportunities in pediatric oncology drug development. Children's Cause for Cancer Advocacy (CCCA) is pleased to be working with advocates and Congressional champions to help educate lawmakers and the public about these critical issues. The Summit, which is targeted toward Members of Congress, Hill staff, and advocates, is an educational forum to bring awareness to the unique issues facing children with cancer, survivors, and their families. The event is at the Capitol Visitors Center (CVC) Auditorium on September 23, 2011 from 8:30 to 10:00 AM. The event is open to the public, no registration is required.

Panelists will include:

Dr. Peter Adamson, Chair of Children’s Oncology Group (COG), will discuss reauthorization of the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA), including his recommendations for improvement of these two laws;
Dr. Ron Portman, Development Lead, Pediatric Center of Excellence, Bristol Myers Squibb (BMS) and Chair of BIO’s Pediatric Drug Development Committee, will discuss the pharmaceutical industry’s perspective on pediatric cancer drug development - challenges, process, and recommendations from industry;
Dr. Eugenie Kleinerman, Head of the Division of Pediatrics at M.D. Anderson Cancer Center, will discuss clinical trials, effects of adult drugs on children; and
Nancy Goodman, Executive Director of Kids V Cancer, will discuss the Creating Hope Act and incentives for pediatric cancer drug development.

Hyundai Hope on Wheels

Following the Caucus, on Friday, September 23, Hyundai Hope on Wheels will hold a Press Conference, open to the public, at which they will make a major announcement on the work that Hope on Wheels is doing on behalf of pediatric cancer. An important highlight of the event will be the recognition of four local hospitals that are September Hope Grant winners: Georgetown University Hospital, Johns Hopkins, Inova Fairfax and Children’s National Medical Center. The ceremony will immediately follow the Childhood Cancer Summit discussed above. Both events will celebrate the progress we have made in fighting pediatric cancer, while continuing to raise awareness around the issue. This event follows the Childhood Cancer Summit in the CVC and is open to the public, no registration required.

PAC2 Workshop

On Thursday, September 22 PAC2 will hold its second Workshop. The Fall PAC2 workshop will build on the success of the Spring 2011 Workshop by continuing to focus on the issues and opportunities within the childhood cancer community and how our community can collectively respond. The workshop will have three themes:

COMMUNICATING: We will update attendees on current projects and discuss existing barriers that the larger group can help overcome - this helps to reinforce one of the core values of PAC2: action.
INSPIRING: We will learn from experts outside the childhood cancer community about how other diseases and causes have effectively marshaled resources to help achieve their goals - this helps to reinforce the core PAC2 value of innovation.
IDEATING: We will explore pending projects and propose new ones - this helps to reinforce another core value of PAC2:collaboration.

We are honored and thrilled to announce that the Workshop will feature a wonderful pair of keynote speakers: Ronnie Tepp and Michael Manganiello of HCM Strategists, the co-authors of the report Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change. The Wall Street Journal says “[the report] analyzes the factors that helped patient advocates drive research into and drug development for that disease" and stresses the importance of “creating a sense of community among advocates so that different groups are driving towards a common goal”.

Following their keynote, the group will engage in break-out sessions to identify and target fundamental, community-wide issues and opportunities. Teams from various organizations hope to cooperate to accelerate movement towards our shared goal of a 100% durable cure rate for childhood cancers, while minimizing long-term side effects for patients.

Any questions or comments, please contact us at info@PeopleAgainstChildhoodCancer.org. Thanks for all you do.

PAC2

"A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." - Margaret Mead

Life in Pictures

2011-09-09T00:05:00.000-07:00

There is so much to share. I have been struggling with sitting before this screen. Needing to be present for so many different things, yet wanting to record every last bit.

This has been an amazing summer. Gregory has successfully (so far) discontinued his steroids and Rapamune. He is no longer on any immune suppressant medications. Crossing my fingers that we have a long, boring fall/winter. He is receiving IVIgG every four weeks. I have a feeling this may end up being every three weeks once cold/flu season hits. We will see.

Gregory ran through the sprinklers for the first time in three years:

Gregory went swimming for the first time in three years:

Gregory's Make-A-Wish was granted:

I met an amazing group of Yoga practitioners. We have partnered and are raising awareness and funds for childhood cancer for 46 Mommas / St Baldrick's with a yoga event in Spokane, WA.
Yoga People Care....About Childhood Cancer

I leave Tuesday, September 20th for Washington, DC. I'm going with a head full of hair and will return with a shiny bald noggin.

I have photo documentation that Daddy does smile and is pretty stinkin' nice to look at!

I made a dress for AnnMarie.

Taking moments to catch up with family and getting myself on the other side of the camera:

Still trying to catch Curtis in a moment when he will let me take his picture (This is what you get, kid!):

Mostly? Plenty of this:

Tucked away in our little circle of security. Still head shy. Still not ready or able to 're-join' society. Don't know if I every will. I do know that whatever I do or wherever I go it will be with purpose, intent and meaning.

46 Mommas is a culmination of that idea. Not only will we be shaving, on stage, during rush hour at Union Station, Washington, DC, but we will be making visits to Capital Hill on Thursday the 22nd. We will be visiting with members of key committees that support and fund childhood cancer legislation. We will be visiting with members and staffers from the pediatric cancer caucus.

We will be filming a Let's CONQUER PSA with/for St Baldrick's.

We will be attending the Pediatric Cancer Caucus Summit on Friday the 23rd.

People Against Childhood Cancer (PAC2) is holding a collaborative workshop for the childhood cancer community on Thursday, September 22.

The childhood cancer community is BRINGING IT to DC. We will be turning the town GOLD! So very proud, honored and humbled to be a part of this week of events.

We still need you, though. "Many hands make light work." The 46 Mommas have issued a $10 Challenge. Via our FaceBook fan page:

"Take our 2-Weeks-to-go-$10-challenge! Help us get closer to our goal of $1Million for St. Baldrick's. If each 1 of our fans donates $10 we'll be $95,630 closer to helping fund lifelong cures! Can you skip 2 coffees this week? Pass on a trip to the movies? Or brown bag lunch? Donate the $10 you save to our event (or the Momma of your choice) to help CONQUER kids' cancer!"

To take this challenge, you can donate on my noggin here: http://www.46mommas.com/mindifinch/

To view what we have raised for our campaign, so far: http://www.stbaldricks.org/events/46mommas/

I want to thank each and every one of you who have donated, so far. While it may not seem like much, I know that you have opened your heart to a world no one really wants to know anything about. I thank you for the piece of your heart that you have offered to all kids. If you've been meaning to make a donation and can make one before the shave, it would help me get that much closer to my goal of $5,000.

If you would prefer to mail a donation in:
St Baldrick's Foundation
1333 S. Mayflower Avenue, Suite 400,
Monrovia, CA 91016

Donation form with my name and participant ID already completed.

While childhood cancer still looms very large in our life, Gregory has had an outstanding summer. EVERY child deserves outstanding summers. Lots and lots of them.

With love, love, love.......for YOU!
Mindi
~Momcologist

P.S.! Almost forgot! I turned the big Four-Tee on Sunday, September 4. Been looking forward to this Belly Button Day. Fiercely. What a better way to celebrate this amazing decade of life than with 46 Mommas Shave For The Brave.

Happy Birrrrthday to Youuuu,
Happy Birrrrthday to Youuuu,
Happy Birrrrthday Dear Mindi,
Happy Birrrrthday to Youuuu!

A few years back, not so long ago, heaven and earth erupted into a major celebration with the news of your impending adventure into this very time and space. You see, someone like Mindi Finch doesn't come along all that often. In fact, there's never been a single one like you, nor is there ever ANY possibility that another will come again. You're an Angel among us. Someone, whose eyes see what no others will EVER see, whose ears hear what no others will EVER hear, and whose perspective and feelings will NEVER, ever be duplicated. Without YOU, the Universe, and ALL THAT IS, would be sadly less than it is.

Quite simply:

You're the kind of person, Mindi,
Who's hard to forget,
A one-in-a-million
To the people you've met.
Your friends are as varied
As the places you go,
And they all want to tell you
In case you don't know:
That you make a big difference
In the lives that you touch,
By taking so little
And giving so much!

Mindi, you are so AWESOME! For your birthday, friends and angels from every corner of the Universe, including buddies you didn't know you had, will be with you to wish you the HAPPIEST of days and an exciting new year in time and space. You won't be alone!

HAPPY BIRTHDAY, Mindi!

Mike Dooley
Orlando, Florida, USA

PS - Mindi, this is going to be YOUR year!!

© TUT ®

46 Mommas Call To Action from FaceBook

2011-08-23T13:41:00.000-07:00

Hello Childhood Cancer Supporters~

As you know, 46 Mommas will be shaving their heads on September 21, in Washington, DC at Union Station during rush hour. This venue was carefully selected due to it's potential for raising a tremendous amount of awareness surrounding the need for childhood cancer research.

This date was also carefully selected. The Pediatric Cancer Caucus is Friday, September 23, in Washington, DC. The 46 Mommas have been asked to attend this amazing event. The presence of 46 Mommas at the Pediatric Cancer Caucus send a message, loud and clear, that Childhood Cancer matters and we will be heard.

People Against Childhood Cancer (PAC2) is holding a workshop on Thursday, September 22, in Washington, DC. Collaborating with the childhood cancer community. Via PAC2: "This Fall’s workshop will build on the success of the Spring 2011 Workshop by continuing to focus on significant issues and opportunities facing the childhood cancer community and how our community can collectively respond."

The childhood cancer community is bringing our cause to our nation's capital. This week of events will be a resounding call to action to every person who crosses our paths.

Along with the shave event, 46 Mommas will be hosting an invitation only, VIP "Ask Me Why I'm Bald" reception. This reception will run concurrently with the shave event. The purpose of 46 Mommas includes raising awareness. In order to do this on a large scale, we have invited celebrities, congressional representatives, media celebrities and key players from the world of childhood cancer research. These invitees can help us to further our cause of funding childhood cancer research. The need for a private space for these invitees is crucial. We cannot expect these honored guests to sit amongst the masses upon benches in front of the shave stage. The childhood cancer community needs their support and the support of the communities they represent. 46 Mommas are bringing it to Washington, DC.

Now we need you. We are falling short of the funds needed to cover the expense for this VIP reception. We need sponsors to help us cover the cost. We need a handful of sponsorships in the $250 - $500 range. All sponsorships are tax deductible and an In Kind donation to St Baldrick's.

We have nearly 9,500 FaceBook fans of 46 Mommas Shave For The Brave. We are asking that each and every one of you help us to fund this reception, in order to bring this phenomenal week of raising awareness and funds for childhood cancer research to Washington, DC.

This is our call to action. It's too late for our kids, the kids of tomorrow are counting on us.

46 Mommas sponsorship menu can be found here: http://46mommas.com/index.php/sponsors-who-give/become-a-sponsor.html

Respectfully, humbly, and lovingly,

Mindi Finch

Class of '11 46 Momma Team Leader

Via 46 Mommas FaceBook page.

Diagnosiversary ~ Listen To Your Mother Show Spokane 2011

2011-08-23T11:11:00.000-07:00

Below is my essay reading from Listen To Your Mother Show Spokane 2011.

One year. One year ago, today, Gregory, age 3, was diagnosed with cancer.

Carrying him in my arms, we made the walk, down the longest hallway I've ever walked, from our room in peds intermediate to the procedure room. I placed his weak and sick little body on the gurney and stood back and watched. Watched as a team of staff hooked him up to a plethora of strange things.

I stood silently as the anesthesiologist began Gregory’s sedation.

I stood silently and watched, as they flipped his little body over. Pointing his hip to the ceiling. Baring his backside for all to see. Prepping the area with antiseptic.

I stood there silently.

I clutched Gregory's blanket, watching in horror.

The curtains were drawn and I was saved from seeing the actual Bone Marrow Aspirate. I remember reaching out for Larry's hand. I remember silent tears gathering in the corners of my eyes. Shocked that THIS is where I was. Terrified.

This was Wednesday morning and I had been with Gregory, ever since he was admitted on Monday. The staff had told me that if his marrow showed no signs of leukemia, he would remain in peds intermediate, until they figured out what was wrong with Gregory. If his marrow did prove to be leukemic, he would be immediately moved to the Pediatric Oncology Unit.

The Bone Marrow Aspirate didn't take more than ten minutes to complete.

After a flurry of activity myself, Daddy, my Mom and Gregory were left alone with the the nurse who was monitoring him. We stood around him, like a vigil. We had two hours of nervous and stilted conversation.

Constantly watching the monitors, as Gregory slept off the sedation.

I wanted nothing more, than to climb upon that gurney and snuggle him out of it. They wanted his airway free, so I had to stand at his side, hold his hand, grip his leg, rub his back, stroke his hair. Gaze at his precious face.

Towards the end of our waiting, Larry needed quarters to feed the meter. He was out of change and I knew I had plenty in my wallet. I took off, again, down that long hallway towards our room. As I approached, I noticed movement inside.

A cart parked halfway in, halfway out of the room.

I came to a screeching halt at the doorway and froze. Unable to catch my breath. Lights, blinking in my peripheral vision. My heart pounding so hard in my ears, I was sure you could have heard it had you been standing near me.

The bed was elevated and stripped to it's rubber covered mattress. There was a staff member scrubbing the room. Our belongings, that I had neatly placed at the end of the couch? Gone. Not an item in sight.
At that moment........

I knew.

I don’t recall Dr. Reynolds' exact words, something close is "We've got a long road."

Suffocating, hiccupping, stifling, chest-searing sobs.
Trying to breath and keep my cool.
Wanting to unleash this beast that is now lodged, permanently in my solar plexus.
Compressing my lungs.

knee-jerk questions.
Chemo? Yes.
Hair loss? Yes.
When? Immediately.

Gregory stirred more and more. He was stable enough to move. I gathered his little self and we proceeded through the maze that led to the Pediatric Oncology Unit.

Numb, in shock and exhausted, we were escorted to purple room 308, right in front of the nurses station.

All of our belongings were there. The bed was turned down and covered with a new, soft fleece blanket. Our first "gift" from the world of Childhood Cancer.

Next to the bed was a huge, wing backed recliner. I clung to Gregory and sat down in it. Not wanting to release him.

The words resonating through my brain, “Your child has cancer.”

TweetChat Transcript for Friday, August 19 Topic: Childhood Cancer Awareness Month #ccam

2011-08-19T07:18:00.000-07:00

@TheCoffeeKlatch Mindi, signing off. Asking, listening, witnessing. To know the road ahead, ask those coming back. ~Chinese Proverb #ccam #tck

Fri Aug 19 13:58:59 +0000 2011 - tweet id 104552945034596354 - #1
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@TheCoffeeKlatch Thank you for being with us today! Wear your gold in September, 'cause 'Kids get cancer, too.'. #ccam #childhoodcancer #tck

Fri Aug 19 13:55:14 +0000 2011 - tweet id 104552003681779712 - #2
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@TheCoffeeKlatch Always w/the spirit of Marianne's words: You are your child's best advocate, if not you then who, become an informed educated parent. #tck

Fri Aug 19 13:51:04 +0000 2011 - tweet id 104550953344184320 - #3
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@TheCoffeeKlatch Next Friday's #tweetchat we will be talking about @pac_2 People Against #childhoodcancer. http://t.co/kD3Lvko #ccam #tck

Fri Aug 19 13:49:00 +0000 2011 - tweet id 104550431992184832 - #4
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@FunandFunction Tune in~Introducing @thecoffeeklatch sister network Special Needs Talk Radio launching September 6th specialneedstalkradio.com #TCK #autism

Fri Aug 19 13:36:25 +0000 2011 - tweet id 104547267708588033 - #5
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@TheCoffeeKlatch Contact @accoorg and have a PJammin event at your local school! #ccam http://t.co/1WGAq5s #childhoodcancer #tck

Fri Aug 19 13:32:46 +0000 2011 - tweet id 104546350212984832 - #6
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@TheCoffeeKlatch For all on FB, get ready for September - #ChildhoodCancerAwareness Month #CCAM - by clicking "Attending" @ http://t.co/q4PJSqK #tck

Fri Aug 19 13:30:03 +0000 2011 - tweet id 104545664242941952 - #7
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@TheCoffeeKlatch Local #ccam events can also be found through @alexslemonade, @stbaldricks & @cookies4kids. #tck

Fri Aug 19 13:28:54 +0000 2011 - tweet id 104545375238619136 - #8
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@TheCoffeeKlatch @AmayasAngels Good morning and welcome! #tck

Fri Aug 19 13:24:24 +0000 2011 - tweet id 104544242092883968 - #9
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@AmayasAngels RT @46mommas: RT @TheCoffeeKlatch: Sept is National #ccamin the US. Gold is the color for #childhoodcancer awareness. #tck

Fri Aug 19 13:23:49 +0000 2011 - tweet id 104544094516293632 - #10
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@TheCoffeeKlatch This is the presidential proclamation from #ccam in '10.http://t.co/XDEMRA0 #tck

Fri Aug 19 13:22:51 +0000 2011 - tweet id 104543853620637697 - #11
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@RaisingASDKids RT @TheCoffeeKlatch: Sept is National #ccam in the US. Gold is the color for #childhoodcancer awareness. #tck

Fri Aug 19 13:19:54 +0000 2011 - tweet id 104543110952009728 - #12
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@TheCoffeeKlatch @RaisingASDKids Morning my dear! #tck

Fri Aug 19 13:19:47 +0000 2011 - tweet id 104543082460094465 - #13
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@TheCoffeeKlatch If you are looking for local #ccam events, check with your @accoorg chapter. http://t.co/Yp9HzLz #tck

Fri Aug 19 13:19:21 +0000 2011 - tweet id 104542972544163842 - #14
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@RaisingASDKids RT @TheCoffeeKlatch: The Pediatric Cancer Caucus is being held during #ccam. September 23, in Washington, DC. #tck

Fri Aug 19 13:18:53 +0000 2011 - tweet id 104542854508056576 - #15
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@TheCoffeeKlatch Did you know that @46mommas will be in DC, at Union Station on Sept 21, shaving their heads for #ccam with @stbaldricks? #tck

Fri Aug 19 13:17:25 +0000 2011 - tweet id 104542484138438656 - #16
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@TheCoffeeKlatch @hotdog_mike Morning Mr Mike! Do you have any special#ccam events for September? #tck

Fri Aug 19 13:15:55 +0000 2011 - tweet id 104542107754176512 - #17
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@TheCoffeeKlatch The Pediatric Cancer Caucus is being held during #ccam. September 23, in Washington, DC. #tck

Fri Aug 19 13:15:11 +0000 2011 - tweet id 104541921527074816 - #18
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@hotdog_mike RT @46mommas: RT @TheCoffeeKlatch: Sept is National #ccam in the US. Gold is the color for #childhoodcancer awareness. #tck

Fri Aug 19 13:14:52 +0000 2011 - tweet id 104541842263126018 - #19
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@TheCoffeeKlatch @46mommas Morning, Mommas! Sending oodles of LOVE your way! #tck

Fri Aug 19 13:13:59 +0000 2011 - tweet id 104541619906281472 - #20
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@46mommas RT @TheCoffeeKlatch: Sept is National #ccam in the US. Gold is the color for #childhoodcancer awareness. #tck

Fri Aug 19 13:12:26 +0000 2011 - tweet id 104541229961838592 - #21
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@TheCoffeeKlatch Our local @accoorg chapter petitions our city's govt to proclaim Sept as #ccam. Did you know you could do that? #tck

Fri Aug 19 13:10:47 +0000 2011 - tweet id 104540817057775616 - #22
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@TheCoffeeKlatch The purpose of #ccam is to raise awareness that 'Kids get cancer, too.' and the need to fund #childhoodcancer research. #tck

Fri Aug 19 13:09:18 +0000 2011 - tweet id 104540443865399296 - #23
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@TheCoffeeKlatch I am participating in several #ccam events in Sept. @46mommas, @yogapeoplecare and our local @accoorg. Lots going on. #tck

Fri Aug 19 13:08:23 +0000 2011 - tweet id 104540213103177728 - #24
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@TheCoffeeKlatch Sept is National #ccam in the US. Gold is the color for#childhoodcancer awareness. #tck

Fri Aug 19 13:06:23 +0000 2011 - tweet id 104539710210326528 - #25
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@TheCoffeeKlatch There are so many days/months of awareness to remember.#ccam is especially important to our family. Gregory is our survivor. #tck

Fri Aug 19 13:04:33 +0000 2011 - tweet id 104539248014798848 - #26
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@TheCoffeeKlatch Mindi, here! Thanks for joining us. The hashtag that we use for#childhoodcancer awareness month is #ccam. #tck

Fri Aug 19 13:02:57 +0000 2011 - tweet id 104538846703779841 - #27
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@TheCoffeeKlatch Welcome to another #childhoodcancer #tweetchat!#childhoodcancer awareness month is Sept. Did you know? What are YOU doing?#ccam #tck

Fri Aug 19 13:01:01 +0000 2011 - tweet id 104538356809089025 - #28
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@TheCoffeeKlatch To join our automated chatroom go to http://t.co/wlTvGk0 sign in - click authorize app - turn your speed down to 5 seconds #tck

Fri Aug 19 12:59:17 +0000 2011 - tweet id 104537923776561152 - #29
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@AmayasAngels RT @magnificentmndi: Grab your coffee! #tweetchat in 20 minutes! Sept is #childhoodcancer awareness month. R you aware? #ccam #tck http: ...

Fri Aug 19 12:46:09 +0000 2011 - tweet id 104534616681095168 - #30
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@TheCoffeeKlatch Grab your coffee! #tweetchat in 20 minutes! Sept is#childhoodcancer awareness month. Are you aware? #ccam http://t.co/wlTvGk0 #tck

Fri Aug 19 12:40:31 +0000 2011 - tweet id 104533198037450752 - #31
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TweetChat transcript for Friday, August 12. Topic: Do you Dr Google. The good, the bad, the ugly.

2011-08-12T07:24:00.000-07:00

TweetChat transcript for Friday, August 12. Topic: Do you Dr Google. The good, the bad, the ugly.
*Tweets are in reverse chronological order. Please start from the bottom.
Perma Link: #tck TweetChat Transcript 8/12/11

@TheCoffeeKlatch Enjoy your week. Until next time, Mindi signing off. You can always reach me here @magnificentmndi Love, love, love... #tck

Fri Aug 12 13:59:24 +0000 2011 - tweet id 102016337412497409 - #2
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@TheCoffeeKlatch As always, questioning, listening and responding. *To know the road ahead, ask those coming back. ~Chinese Proverb #tck

Fri Aug 12 13:56:36 +0000 2011 - tweet id 102015629460119552 - #3
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@TheCoffeeKlatch Friday 8/19 TweetChat. September is National #childhoodcancerAwareness Month. What is happening around the nation for #ccam. #tck

Fri Aug 12 13:54:30 +0000 2011 - tweet id 102015102798151680 - #5
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@TheCoffeeKlatch We will be sharing events/activities for #ccam. Be sure to join us to share your communities happenings. #childhoodcancer #tck

Fri Aug 12 13:52:44 +0000 2011 - tweet id 102014660064190466 - #6
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@bellarose0608 Thank you! #tck

Fri Aug 12 13:52:15 +0000 2011 - tweet id 102014534885191680 - #7
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@monicamfochtman RT @TheCoffeeKlatch: Next Friday we will be discussing National Childhood Cancer Awareness Month. The month of September is #ccam. #tck

Fri Aug 12 13:52:14 +0000 2011 - tweet id 102014531450048513 - #8
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@dialdoctors RT @TheCoffeeKlatch: This has been a great conversation. Thanks to every last one of you for being here and participating! #tck

Fri Aug 12 13:51:50 +0000 2011 - tweet id 102014430115659777 - #9
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@TheCoffeeKlatch Next Friday we will be discussing National Childhood Cancer Awareness Month. The month of September is #ccam. #tck

Fri Aug 12 13:51:37 +0000 2011 - tweet id 102014377015779328 - #10
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@TheCoffeeKlatch This has been a great conversation. Thanks to every last one of you for being here and participating! #tck

Fri Aug 12 13:50:20 +0000 2011 - tweet id 102014054356353025 - #11
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@TheCoffeeKlatch RT @bellarose0608: CureSearch for Clinical Trials, MayoClinic and NIH as well #tck

Fri Aug 12 13:48:41 +0000 2011 - tweet id 102013637471911936 - #12
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@TheCoffeeKlatch RT @bellarose0608: I like ped-onc.org, and ACOR most of the time. #tck

Fri Aug 12 13:48:29 +0000 2011 - tweet id 102013589136748546 - #13
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@TheCoffeeKlatch Marianne's mantra really fits: You are your child's best advocate, if not you then who, become an informed educated parent. #tck

Fri Aug 12 13:48:11 +0000 2011 - tweet id 102013514218078209 - #14
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@bellarose0608 CureSearch for Clinical Trials, MayoClinic and NIH as well #tck

Fri Aug 12 13:47:45 +0000 2011 - tweet id 102013404369268736 - #15
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@bellarose0608 I like ped-onc.org, and ACOR most of the time. #tck

Fri Aug 12 13:47:20 +0000 2011 - tweet id 102013299587166208 - #16
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@TheCoffeeKlatch RT @monicamfochtman: @TheCoffeeKlatch ACOR list serv "RhabdoKids" CureSearch and PAC2 were the most helpful at DX #tck

Fri Aug 12 13:46:02 +0000 2011 - tweet id 102012972255285248 - #17
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@cliffsull RT @TheCoffeeKlatch: Everyone communicates and processes differently. Don't stop searching/asking until you fully understand. #tck

Fri Aug 12 13:45:55 +0000 2011 - tweet id 102012942282801152 - #18
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@winklett RT @TheCoffeeKlatch: Everyone communicates and processes differently. Don't stop searching/asking until you fully understand. #tck EXACTLY

Fri Aug 12 13:45:49 +0000 2011 - tweet id 102012918626922496 - #19
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@TheCoffeeKlatch Everyone communicates and processes differently. Don't stop searching/asking until you fully understand. #tck

Fri Aug 12 13:45:31 +0000 2011 - tweet id 102012840155680768 - #20
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@winklett RT @TheCoffeeKlatch: I believe that questions should be asked numerous times. Gather information from several sources. #tck

Fri Aug 12 13:45:30 +0000 2011 - tweet id 102012839312637952 - #21
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@monicamfochtman @TheCoffeeKlatch ACOR list serv "RhabdoKids" CureSearch and PAC2 were the most helpful at DX #tck

Fri Aug 12 13:45:13 +0000 2011 - tweet id 102012765748723712 - #22
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@TheCoffeeKlatch I believe that questions should be asked numerous times. Gather information from several sources. #tck

Fri Aug 12 13:44:41 +0000 2011 - tweet id 102012632285986816 - #23
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@TheCoffeeKlatch @winklett Good morning! #tck

Fri Aug 12 13:43:34 +0000 2011 - tweet id 102012351498289152 - #24
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@TheCoffeeKlatch What is YOUR favorite online resource for information specific to your kiddos #specialneeds? #tck

Fri Aug 12 13:42:46 +0000 2011 - tweet id 102012149299298304 - #25
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@TheCoffeeKlatch What is YOUR favorite online resource for information specific to your kiddos @specialneeds? #tck

Fri Aug 12 13:41:09 +0000 2011 - tweet id 102011741751349248 - #26
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@dialdoctors @barefootglenda When you bring up concerns, Dr should discuss them with you with respect and try to find medically reasonable solution. #tck

Fri Aug 12 13:41:03 +0000 2011 - tweet id 102011715872501760 - #27
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@monicamfochtman @TheCoffeeKlatch MOrning!!! #tck

Fri Aug 12 13:40:41 +0000 2011 - tweet id 102011625434906625 - #28
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@TheCoffeeKlatch RT @monicamfochtman remember that published research is almost 3 yrs old by the time it hits print. & there are always exceptions. #tck #tck

Fri Aug 12 13:39:22 +0000 2011 - tweet id 102011293711605760 - #29
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@TheCoffeeKlatch @monicamfochtman Good morning, lady! #tck

Fri Aug 12 13:38:50 +0000 2011 - tweet id 102011160928329729 - #30
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@TheCoffeeKlatch RT @trishpip: I have heard medical pros advise patients to not google because theyll make themselves upset. #tck

Fri Aug 12 13:38:27 +0000 2011 - tweet id 102011062056001537 - #31
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@TheCoffeeKlatch Yet...... if I want to know what Methemoglobinemia is, I start with Wiki. Then take it where it will.... #tck

Fri Aug 12 13:38:04 +0000 2011 - tweet id 102010969064079360 - #32
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@monicamfochtman It is also imp to remember that published research is almost 3 yrs old by the time it hits print. & there are always exceptions. #tck #tck

Fri Aug 12 13:37:24 +0000 2011 - tweet id 102010798955692032 - #33
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@trishpip I have heard medical pros advise patients to not google because they'll make themselves upset. #tck

Fri Aug 12 13:37:20 +0000 2011 - tweet id 102010783591964673 - #34
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@TheCoffeeKlatch @dialdoctors There are many instances where the entries were severely lacking in current content. #tck

Fri Aug 12 13:36:12 +0000 2011 - tweet id 102010496051445760 - #35
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@dialdoctors About Wiki: For example, patients don't care about compositions or outdated theories. They need useful information that relates to them #tck

Fri Aug 12 13:34:48 +0000 2011 - tweet id 102010144753324032 - #36
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@TheCoffeeKlatch Wiki is my dictionary. It has been very helpful in that respect. #tck

Fri Aug 12 13:34:47 +0000 2011 - tweet id 102010141041360896 - #37
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@dialdoctors @TheCoffeeKlatch Wiki includes so many irrelevant facts that only ppl with health literacy find real value.#tck

Fri Aug 12 13:33:20 +0000 2011 - tweet id 102009777848188928 - #38
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@TheCoffeeKlatch I have been known to Dr Google out of fear. I am an information freak and like to be prepared. It works for me. #tck

Fri Aug 12 13:32:49 +0000 2011 - tweet id 102009645207527424 - #39
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@TheCoffeeKlatch Shall we discuss Wiki? I've heard so much negative chatter about using Wiki. I don't have an opinion either way. #tck

Fri Aug 12 13:30:22 +0000 2011 - tweet id 102009027822747649 - #40
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@TheCoffeeKlatch RT @trishpip: Generally, I use google the way youd use a reference book - to get more information about a topic youre curious about. #tck

Fri Aug 12 13:29:19 +0000 2011 - tweet id 102008763376078848 - #41
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@TheCoffeeKlatch RT @bellarose0608: If U R educated & u bring the situation to ur dr already educated ur conversation & understanding will be productive #tck

Fri Aug 12 13:29:07 +0000 2011 - tweet id 102008713048629248 - #42
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@trishpip Generally, I use google the way you'd use a reference book - to get more information about a topic you're curious about. #tck

Fri Aug 12 13:28:34 +0000 2011 - tweet id 102008577048330240 - #43
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@TheCoffeeKlatch So much information is given to you in chunks. Digesting it is challenging. I take the time and get to know it online. #tck

Fri Aug 12 13:28:05 +0000 2011 - tweet id 102008454461394944 - #44
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@bellarose0608 If you are educated, and u bring the situation to ur doctor already educated ur conversation and understanding will be more productive #tck

Fri Aug 12 13:27:29 +0000 2011 - tweet id 102008303588098049 - #45
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@TheCoffeeKlatch It also comes into play when supporting my community. Yet I always preface any technical discussions w/"This is OUR story." #tck

Fri Aug 12 13:26:57 +0000 2011 - tweet id 102008169504583681 - #46
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@bellarose0608 RT @TheCoffeeKlatch: My intent is to be better educated so I can understand what is going on & have a productive discussion#tck

Fri Aug 12 13:25:50 +0000 2011 - tweet id 102007889891307520 - #47
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@dialdoctors The key is getting to middle ground. Arming yourself with knowledge with all the info out there from those who know & have been there. #tck

Fri Aug 12 13:25:48 +0000 2011 - tweet id 102007880772886528 - #48
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@TheCoffeeKlatch If I understand WHY he has that symptom, I can be better at seeing it appear at a later date. #tck

Fri Aug 12 13:25:33 +0000 2011 - tweet id 102007816906219520 - #49
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@dialdoctors True :) RT @TheCoffeeKlatch: @dialdoctors I think the bigger question is What is your intent? #tck

Fri Aug 12 13:25:07 +0000 2011 - tweet id 102007710156984322 - #50
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@TheCoffeeKlatch My intent is to be better educated so I can understand what is going on with G's body and have a productive discussion. #tck

Fri Aug 12 13:24:15 +0000 2011 - tweet id 102007490014744576 - #51
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@bellarose0608 RT @dialdoctors: I think the real debate gets down to: Who do you trust more? Your doctor or Dr. Google?#tck

Fri Aug 12 13:23:40 +0000 2011 - tweet id 102007342761123840 - #52
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@TheCoffeeKlatch @dialdoctors I think the bigger question is What is your intent?#tck

Fri Aug 12 13:23:36 +0000 2011 - tweet id 102007327380619265 - #53
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@TheCoffeeKlatch RT @dialdoctors: While using Dr. Google for medical needs & dx isnt the best route, its great to have a hand from Google for research. #tck

Fri Aug 12 13:23:07 +0000 2011 - tweet id 102007204953079809 - #54
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@dialdoctors I think the real debate gets down to: Who do you trust more? Your doctor or Dr. Google? #tck

Fri Aug 12 13:22:44 +0000 2011 - tweet id 102007106785378306 - #55
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@TheCoffeeKlatch @trishpip Good morning! #tck

Fri Aug 12 13:21:57 +0000 2011 - tweet id 102006913205669889 - #56
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@bellarose0608 RT @dialdoctors: Physicians and patients should be aware that the quality of information available online varies greatly.>YES! #tck

Fri Aug 12 13:21:31 +0000 2011 - tweet id 102006802144698368 - #57
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@dialdoctors RT @youarelovedTSS: @TheCoffeeKlatch exactly! quality of online information varies widely -- peer reviewed journals are always ideal #tck

Fri Aug 12 13:21:23 +0000 2011 - tweet id 102006767952736257 - #58
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@TheCoffeeKlatch For Gregory's disease The Blood Journal has been an awesome resource. http://bloodjournal.hematologylibrary.org/ #tck

Fri Aug 12 13:21:16 +0000 2011 - tweet id 102006739725062145 - #59
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@bellarose0608 RT @TheCoffeeKlatch: "docs dont know EVERYTHING there is to know?" >we've seen enough mis-dx to know this can be true at times. #tck

Fri Aug 12 13:21:04 +0000 2011 - tweet id 102006690798505984 - #60
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@trishpip RT @TheCoffeeKlatch: I've also learned to Google better. I seem to get better quality information using proper terminology. #tck

Fri Aug 12 13:20:56 +0000 2011 - tweet id 102006656778514432 - #61
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@dialdoctors While using Dr. Google for medical needs & diagnoses isn't the best route to take, it's great to have a hand from Google for research. #tck

Fri Aug 12 13:20:45 +0000 2011 - tweet id 102006609131216896 - #62
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@TheCoffeeKlatch RT @dialdoctors: Physicians and patients should be aware that the quality of information available online varies greatly. #tck

Fri Aug 12 13:20:12 +0000 2011 - tweet id 102006469809020928 - #63
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@TheCoffeeKlatch @RiversidePD Good morning and welcome! #tck

Fri Aug 12 13:19:54 +0000 2011 - tweet id 102006393602715648 - #64
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@dialdoctors Physicians and patients should be aware that the quality of information available online varies greatly. #tck

Fri Aug 12 13:19:34 +0000 2011 - tweet id 102006311402741760 - #65
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@TheCoffeeKlatch If something I've learned doesn't make sense to me, I ALWAYS ask a professional for clarification. #tck

Fri Aug 12 13:19:19 +0000 2011 - tweet id 102006248286855170 - #66
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@TheCoffeeKlatch My heaviest google usage is simply to understand terminology. Physiology, too. #tck

Fri Aug 12 13:18:15 +0000 2011 - tweet id 102005981684314113 - #67
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@TheCoffeeKlatch I've also learned to Google better. I seem to get better quality information using proper terminology. #tck

Fri Aug 12 13:17:22 +0000 2011 - tweet id 102005758715109376 - #68
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@youarelovedTSS @TheCoffeeKlatch everyone should be focused on continuing to learn and grow - including drs #tck

Fri Aug 12 13:16:44 +0000 2011 - tweet id 102005599721631744 - #69
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@TheCoffeeKlatch Do I dare say that docs don't know EVERYTHING there is to know? I think an educated advocate is a key player. Always questioning. #tck

Fri Aug 12 13:15:36 +0000 2011 - tweet id 102005315163267072 - #70
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@bellarose0608 One symptom found leads to another dx, leads to another, etc-a vicious cycle, and u dx yourself w/a terrible disease-go to the doctor! #tck

Fri Aug 12 13:14:51 +0000 2011 - tweet id 102005122799910912 - #71
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@TheCoffeeKlatch RT @dialdoctors:Today, 37% of American adults occas. use the Internet 2 self-dx illness>how many of those incorrectly dx themselves? #tck

Fri Aug 12 13:14:09 +0000 2011 - tweet id 102004949101191169 - #72
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@TheCoffeeKlatch Yes, I am guilty of 'symptom searching'. Wanting to match symptoms to a cause.... #tck

Fri Aug 12 13:13:10 +0000 2011 - tweet id 102004700479619072 - #73
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@bellarose0608 RT @dialdoctors:Today, 37% of American adults occas. use the Internet 2 self-dx illness>how many of those incorrectly dx themselves? #tck

Fri Aug 12 13:12:14 +0000 2011 - tweet id 102004464977854464 - #74
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@TheCoffeeKlatch RT @youarelovedTSS a friend is fond of saying 87% of all statistics quoted in casual conversation are either misunderstood or made up #tck

Fri Aug 12 13:12:02 +0000 2011 - tweet id 102004413765386240 - #75
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@youarelovedTSS @TheCoffeeKlatch unless you a resource that allows you to access them you are pragmatically "locked out" #tck

Fri Aug 12 13:11:36 +0000 2011 - tweet id 102004308639358976 - #76
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@TheCoffeeKlatch @dialdoctors I like that 'six percent ADMIT'. The real percentage is significantly higher, I assure you! #tck

Fri Aug 12 13:11:17 +0000 2011 - tweet id 102004226548449280 - #77
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@youarelovedTSS @dialdoctors a good friend is fond of saying 87% of all statistics quoted in casual conversation are either misunderstood or made up #tck

Fri Aug 12 13:10:52 +0000 2011 - tweet id 102004122538090496 - #78
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@TheCoffeeKlatch @youarelovedTSS Good morning! I only wish it was easier to access them. #tck

Fri Aug 12 13:10:26 +0000 2011 - tweet id 102004011544219648 - #79
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@dialdoctors Six percent admit they always seek health advice online, where professionals and nonprofessionals dispense advice at will. #tck

Fri Aug 12 13:10:10 +0000 2011 - tweet id 102003944687013888 - #80
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@TheCoffeeKlatch My Mantra: There has never been another Gregory with this exact disease, going through this exact treatment. Stat of ONE. #tck

Fri Aug 12 13:09:50 +0000 2011 - tweet id 102003861539135488 - #81
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@dialdoctors Today, 37 percent of American adults at least occasionally use the Internet to self-diagnose an illness. #tck

Fri Aug 12 13:09:47 +0000 2011 - tweet id 102003849740550144 - #82
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@youarelovedTSS @TheCoffeeKlatch exactly! quality of online information varies widely -- peer reviewed journals are always ideal #tck

Fri Aug 12 13:09:31 +0000 2011 - tweet id 102003780320632832 - #83
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@TheCoffeeKlatch RT @bellarose0608: Stats dont always hold much water, as we find out early when it comes to certain diagnoses #tck

Fri Aug 12 13:08:55 +0000 2011 - tweet id 102003629598314496 - #84
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@TheCoffeeKlatch @inkscrblr Good morning! Thanks for being here. #tck

Fri Aug 12 13:08:21 +0000 2011 - tweet id 102003487633719296 - #85
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@bellarose0608 Stats don't always hold much water, as we find out early when it comes to certain diagnoses #tck

Fri Aug 12 13:08:15 +0000 2011 - tweet id 102003463847804928 - #86
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@TheCoffeeKlatch A personal frustration....medical/journal articles are often available by paid subscription. I understand why, but..... #tck

Fri Aug 12 13:07:42 +0000 2011 - tweet id 102003326253662208 - #87
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@inkscrblr RT @TheCoffeeKlatch: Through times of anxiety and wanting knowledge I seek out Dr Google. #tck

Fri Aug 12 13:07:32 +0000 2011 - tweet id 102003282523865089 - #88
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@TheCoffeeKlatch @dialdoctors Morning! Happy to have you along! #tck

Fri Aug 12 13:06:39 +0000 2011 - tweet id 102003059089080321 - #89
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@TheCoffeeKlatch I am also always on the lookout for families with G's same dx. Wanting to connect and offer support. #tck

Fri Aug 12 13:06:11 +0000 2011 - tweet id 102002945033375744 - #90
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@dialdoctors Good morning Mindi! So glad to be joining on this Friday morning. I definitely Dr Google? More coming up. @TheCoffeeKlatch #tck

Fri Aug 12 13:06:00 +0000 2011 - tweet id 102002897063124993 - #91
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@bellarose0608 RT @TheCoffeeKlatch: @bellarose0608 I google like crazy about Gs health.Take it w/a grain of salt & always clarify w/doctors>DEFINITELY #tck

Fri Aug 12 13:05:31 +0000 2011 - tweet id 102002774836908033 - #92
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@TheCoffeeKlatch My greatest lesson was to surrender to the fact that G is a statistic of ONE. I do not put any weight in stats. #tck

Fri Aug 12 13:04:45 +0000 2011 - tweet id 102002583467597824 - #93
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@TheCoffeeKlatch @bellarose0608 I google like crazy about G's health. Take it with a grain of salt and always clarify with his doctors. #tck

Fri Aug 12 13:03:35 +0000 2011 - tweet id 102002290134753280 - #94
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@bellarose0608 And certain "minor" medical issues #tck

Fri Aug 12 13:03:35 +0000 2011 - tweet id 102002289417519104 - #95
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@bellarose0608 But I do google when I want to know about specific behaviors or issues with my kiddos. #tck

Fri Aug 12 13:03:02 +0000 2011 - tweet id 102002150871277568 - #96
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@bellarose0608 But I do pick & choose when and what I google - I specifically did NOT google when my daughter was diagnosed with Wilms-2 much bad info #tck

Fri Aug 12 13:02:20 +0000 2011 - tweet id 102001975599702018 - #97
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@TheCoffeeKlatch We want information, comfort, support, we want to KNOW the details about our #specialneeds kiddos. #tck

Fri Aug 12 13:02:06 +0000 2011 - tweet id 102001914216062976 - #98
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@TheCoffeeKlatch @bellarose0608 Morning! Thanks for being here! #tck

Fri Aug 12 13:01:05 +0000 2011 - tweet id 102001661920284672 - #99
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@TheCoffeeKlatch Through times of anxiety and wanting knowledge I seek out Dr Google. #tck

Fri Aug 12 13:00:41 +0000 2011 - tweet id 102001559759622144 - #100
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@bellarose0608 Morning Mindi! I Google daily!!! #tck

Fri Aug 12 13:00:29 +0000 2011 - tweet id 102001508526198785 - #101
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@TheCoffeeKlatch Good morning and WELCOME! Mindi, here. Do you Dr Google? I sure do. #tck

Fri Aug 12 13:00:05 +0000 2011 - tweet id 102001407967768577 - #102
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@TheCoffeeKlatch To join our automated chatroom go tohttp://tweetchat.com/room/tck sign in - click authorize app - turn your speed down to 5 seconds #tck

Fri Aug 12 12:54:34 +0000 2011 - tweet id 102000019321798656 - #103
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@LornadEnt Help for Struggling Readers: The Reading Focus Card Receives Prestigious Award http://t.co/KySKFSW #tck #reading #readingproblems #dyslexia

Fri Aug 12 12:45:40 +0000 2011 - tweet id 101997778980454400 - #104
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@TheCoffeeKlatch Grab your coffee! TweetChat in 20 minutes. Do you Dr Google?#Childhoodcaner #specialneeds @thecoffeeklatch #tck http://ow.ly/61zhx #tck

Fri Aug 12 12:40:43 +0000 2011 - tweet id 101996532722712576 - #105
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@magnificentmndi Grab your coffee! TweetChat in 20 minutes. Do you Dr Google?#Childhoodcaner #specialneeds @thecoffeeklatch #tck http://ow.ly/61zhx

Fri Aug 12 12:39:52 +0000 2011 - tweet id 101996319782088707 - #106
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MindiTheMagnificent

Ye gads! I do remember how to do this!

DKMS Gala and Gregory's Bone Marrow Donor ~ Part IV

DKMS Gala & Gregory's Bone Marrow Donor ~ Part III Wednesday

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DKMS Gala and Gregory's Bone Marrow Donor ~ Part I

*sound of a cat puking a hair ball*

Sticking my foot in it.

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NaBloPoMo.......*crossing fingers*

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TweetChat transcript for Friday, August 12. Topic: Do you Dr Google. The good, the bad, the ugly.

sound of a cat puking a hair ball

NaBloPoMo.......crossing fingers