Beginning to break my silence.

The pull to the keyboard is ferocious. I find myself sitting before this screen constantly. Then I loose focus. My thoughts clamor for attention. "Get me out! Turn me into black and white type!" I am desperately trying to commit to sitting here, frequently, until I can find some order in my thoughts.

Writing through Gregory's transplant and his two years or so of healing was a focused Odyssey. My brain was singularly focused. I now have room to ponder topics other than Gregory and his acute state of health.

I'm committed to getting it out. Regardless of how it sounds or how scrambled my thoughts are. I am at a point where I am, once again, redefining my voice. Currently it's confused, over stimulated, jumbled. Here's to working through ME. Not just Gregory's experience.

Today I met with Gregory's new teacher. For the last two years, pre-school and kindergarten, he has been safely ensconced in a school community that was small. One where if he missed a truck-load of school, it really was no big deal. He enters first grade in 13 days. Public school. His first real transition to The Real World. Socially, emotionally and academically I am not the least bit concerned. Health wise? I find myself conflicted. Torn between listening to the whispering of my gut that tells me.... "He's ready. He'll be OK." and the reality of blood work, the fact that he has donor marrow and the insecurity of this experience. Germs. Germs have me terrified.

During his annual follow-up in June, we were given the green light to get him re-immunized. Freaking fantastic, right? Yet, until we finish his cycles and I have those titres in my hot little hands, I have zero belief that he is adequately protected. Not to mention that he has a decreased anti-body count. Will it be enough? Will he be able to stay out of the hospital this year? Will he spend weeks out of school avoiding Pertussis, Chicken Pox, Flu?

Then I hear the whisper: "He's ready. He'll be OK." Quickly, behind the whisper, sneaks in a reminder that right now, in this moment, we are NOT in cold/flu season. I begin to doubt. I know too much. I don't know enough. Don't even suggest that I need to have FAITH. That does not help with my insecurity. Faith is not science and that is my current belief system when it comes to Gregory's health.

Yet, shining so bright above all of these worries and unknowns, is the pure and simple fact: Gregory is entering public school. On time. With his brain intact.

Today, AnnMarie, Gregory and I were cruising along down the road. Gregory's Hero Beads hang off my rear-view mirror. He could care less about them and I cherish them. They are my Talisman, my rosary. Every once in a while we go through them and talk about them while going down the road. Today Gregory was interested in the Balloons Bead. When a kiddo has treatment on their birthday, they get a little brass charm of three balloons. Gregory has three of them, representing his fourth, fifth and sixth birthday. The kids commented that he didn't  get one for his seventh birthday and isn't that a bummer. My response turned it around.... Isn't it AWESOME that he didn't get one for his seventh birthday!?!?! Much agreement was had and AnnMarie exclaims: "We didn't think you'd even MAKE it to your seventh birthday!"

*stab*

Gregory: "What do you mean, you didn't think I'd make it to my seventh birthday."
Me: "Well, your cancer was really bad and the treatment for it is really bad, too. The fact that you survived it all is pretty spectacular."

So there it is. This reality that we live with. So freaking grateful for today, so freaking terrified of yesterday and zero security in tomorrow. Trying to embrace tomorrow's uncertainty. Not doing a very good job of it. I am a planner by nature and I still feel like I can't plan a damn thing beyond the next five minutes. I never make promises or commitments. There are plenty of, "I'll try" and "We'll see". I don't want to disappoint anyone. Especially the siblings. I feel frozen in time. Suspended in reality, just waiting with bated breath. Is this really going to happen? Knowing that, as school begins, the frequency of having to say this is going to increase. School activities, time with friends, invitations to events. I KNOW that nothing is guaranteed, I KNOW that. I am just so sick and tired of living in suspended animation. Not just for me, but for Curtis and AnnMarie. Damn it. They deserve a piece of normality, too. They are aging every day and time is slipping away.

I have hopes that this year is going to be a 'turning' point for Gregory's health. I have hopes that he is done with late-effects. I have hopes that he will maintain his status quo. What is hope, though? "Hope is the thing with feathers....." I know too much. I don't know enough.

Yes, although we have skirted death and severe late-effects, I am still filled with fear, anxiety and anger.

While equally filled with gratitude, love and wonder.

THIS is what survivorship looks like. THIS is why I still advocate. THIS is why I still fundraise. THIS is why I soapbox, shave my head, tattoo my body, network and yes, THIS is why I still need to write. Survivorship is not death, but it is hard. In it's unique way.

We are mysteriously lucky. I get to wake up to THIS.






In honor, in memory, in defense,
MindiTheMagnificent
~Momcologist



FaceBook conversation HERE.

Katie Saves Gregory

I've been hoarding these moments and memories. Knowing, with such a certainty, that I cannot do the evening justice. Knowing that these black and white words cannot even begin to convey what my heart felt that night. In the spirit of posterity, I will try my best. With the understanding that my heart is so much bigger than these letters......

April 26, 2012. The night we met Gregory's life saving bone marrow donor, Katie.

I have to tell you, getting all four of us duded up for an evening of red carpet celebrity was far easier than I had anticipated. There was a giddiness and restrained excitement as we all gussied up for our evening in Manhattan.

Curtis was perfection as he worked through all the goodies that come with a tuxedo. Tie, cumber-bun, cuff links, those tiny tux shirt studs and squeaky shoes. He does not own anything but white socks. Guess who forgot to think about picking up a pair of dark socks? Yep. White sport socks for the evening. Earlier in the week he found a black Trilby style hat and donned that for the evening, too. Oh my, he was so proud in his skin. Have not seen him strut like that, ever. Just watching him filled my heart.

AnnMarie was BESIDE herself to get into her own gown. My mom made her gown for her, custom to her taste and fit. A fluffy underskirt, a bit of make-up, special jewelry and handbag. She had picked up a fancy shawl/scarf from a street vendor and added that to her ensemble. Her whole demeanor changed, too. Suddenly regal in her finery.

Gregory?? He climbed into his tux with a nonchalant 'Whatever!" attitude. He would have been just as happy to go dressed in his fleece pants and a t-shirt. His tux fitting was a bit challenging. He is so tiny. The smallest tuxedo jacket was the only one that would fit his trunk. They lengthened the sleeves out as far as they could and the were still a bit short. The length of the jacket was a little short. Yet it did not matter. His Peach's Neet Feet went on and he was set. Except.... he was not ready until he had a little something to carry. While at Toys R Us, earlier in the day, he had picked out a Mario Bros question mark yellow cube, filled with candy. He filled it with Ritz crackers, in case he needed a snack, and that completed his look.

Myself? Well. Suffice it to say, formal gowns are only worn on special occasions and this was THE special occasion. I only hope I get an opportunity to wear it again. A humble 'thank you' to Deena, owner of Finders Keepers, for making me feel beautiful.

Photo Courtesy BFANYC.

One of the only decent image I have of Curtis.

We were all ready at precisely the right time. We went down to the lobby of our hotel and met our 'handler', Alina, from DKMS. There was a car waiting at the curb to take us on a ride through old Manhattan, at dusk.  It was surreal. It was a weekday, so there was still quite a bit of traffic. We wound through narrow streets, surrounded by towering concrete buildings that were built when this city was founded by the financial moguls of the time. Concrete pillars, stairs and sharp cornered facades. Of course the OffSpring had no idea what they were looking at, but I was in awe of the history that we were cruising through. I will return to Manhattan. I would like to spend days wandering through that amazing island. As we started to get closer to Cipriani Wall Street, there was a line up of town cars, limos and black SUVs. Meanwhile, Alina was texting like crazy with Katie's handler, Alex. In order to keep our meet moment a true surprise, we had to ensure that our paths would not cross. If Gregory had been an adult recipient, it would not have been as much of a challenge. Considering that we were the only party with kids, it would have been obvious to her who we were. We wound our way through the street and arrived at what I think was the back entrance. We did not get to walk the red carpet, in hind-sight it makes complete sense. Can't be flashy before we meet! We gathered in a corner of the venue and waited for the festivities to begin. We had a chance to meet a few of the DKMS employees, but it is a bit of a blur. My mind and heart were on other things. Gregory played 'peek a boo' with several of them around the giant Roman columns, Curtis hung out along the wall and AnnMarie beamed while chatting with everyone.

Once we were seated, the evening began. I can't tell you the exact occurrence of events, but Nate Burkus took the stage and the butterflies began in earnest. Awards were given, Heidi Klum was a recipient. One of my personal highlights was Dr Fred Appelbaum. He was chosen to speak on the medical aspect of bone marrow donation. He is the Director of Clinical Research for Fred Hutchinson Cancer Research Center, of which Seattle Cancer Care Alliance  (SCCA) is the treatment arm. Gregory's own bone marrow transplant treatment center. Quickly our time to go on stage approached. In February, Seven2 and ILF Media came to our home and did some video Q&A with us. They put together an amazing video to show at the event, just prior to our meet. This video was shown and the tears started to flow. By now, the people around our table knew who we were. Katharina Harf, Co-founder and Chief Inspiration Officer of DKMS Americas, took the stage and began our introduction. 

Gregory and I went to the stage, up the steps and took out seats. All the while, I have tears streaming. Gregory was blissfully unaware of the gravity of what we were doing. DKMS had thoughtfully placed a bowl of candy for Gregory to munch on while on stage. While Katharina and I exchanged a few words, he looked about, nibbled on gummy candy and Skittles, swinging his feet and 'reading' his cue card. We had a line to give at the end that was a plea for donations and Gregory was to say "Please". I did my part, but Gregory just was not into adding to the plea. Totally OK. 

Then it was time to meet our 25 year old, female, living in the US, anonymous donor.

They had placed Katie, strategically, very far from stage. Katharina called her to the stage, we stood and applauded. And applauded. And applauded. And applauded. It may not have truly been that long, but in the moment it felt like forever. As we applauded, this beautiful spirit, in a royal blue gown came toward us.

First Glimpse. Photo Credit: Sarah Jaye Weiss

Katie came on stage and I fell apart. On came "The Ugly Cry" as I finally got to wrap my arms around this anonymous woman who saved my child's life. This woman, with no children of her own, who had been inspired to potentially save the life of some one else's child. This woman who has lived in my heart and soul for the last three years, while giving LIFE to my youngest. This woman who now shares DNA with Gregory. As I wrapped my arms around her, I realized a little late that she only had eyes for Gregory. Completely understandable. She stepped over to him, knelt down to his level, said hello and looked him right in the eyes. 

So. There you have it. There is more, but it will need to be in a later post. So much more to share. 








Heart a bursting with love....
~MindiTheMagnificent


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