How COULD I forget?

When Gregory was well enough after transplant for us to return HomeHome, we came back to the Spokane area and moved into our family's Water Retreat. Around eight months post transplant, I was having a conversation with a friend of mine. I hesitate to share these next words. They are so steeped in emotions that I have been keeping them tucked in my heart. I'm not even sure of my intent to share them now. I know I cannot 'release' them. They are branded into my heart and my soul. The red-hot branding iron used to imprint them in my being still leaves behind a raw wound that I find myself picking at, from time-to-time.

We had been discussing Gregory's current state of health. The conversation shifted and she asked, "What about Curtis and AnnMarie?" I don't recall the exact words, but she asked me, "Have you forgotten that you have two other children?"

*blink, blink, blink*

I was put in a position of having to justify why all my time and energy were put into saving the life of my youngest. You really cannot understand what this Odyssey is all about, until you experience it. Gregory's life hung in the balance and as a mom, his caregiver and the Momcologist that I am, it was and still is, my responsibility to get him through this and protect him any way I can.

Which meant that I trusted that Curtis and AnnMarie's Daddy and my mom had it covered. I told myself that a period of separation was far easier to deal with the aftermath than a lifetime without Gregory. Daddy and I made the decision to divide and conquer. I'd like to think that the decision we made really did help to save Gregory's life. I'm also willing to admit that this belief is also filled with ego. I've mentioned before that the reason's for Gregory's survival are inexplicable. Crap shoot. Roll of the dice.

I've never really taken the time to write about how this has affected the siblings, Curtis and AnnMarie. The trauma of Gregory's diagnosis, my immediate absence from their presence and my physical absence for 15 months. Even when we returned HomeHome in August of 2010, I was not completely available for them. The return to HomeHome brought on it's own host of adjustments and emotions.

Yet, Curtis and AnnMarie continued to age, continued to grow up and continued to witness their broken mom who spent nearly all her time with their brother. The last year has been much better. We are working on what we can as it comes up. We have (hopefully) re-established a sense of security They know they are loved by me, unconditionally. We still have moments. My GAWD, do we still have moments. Gregory is the youngest, naturally his contributions to the family are age appropriate. His siblings still see a disparity and think he is being favored by me. I don't think this is something that we will ever get over. As special as Curtis and AnnMarie are, there is not getting around the fact that Gregory is, was and will always be favored on some level. *big deep breath* Did I just admit that?

One thing that I know for certain: I am doing the best job I know how to do. I have not failed any of my OffSpring.

They will have a bit of brokenness about them as adults. Truthfully, who doesn't. My hope is that they will recognize it and understand that it is no one's fault. My hope is that all of this talk, talk, talking we do will open their hearts and their brains to see that we made the best decisions for OUR FAMILY. My hope is that it won't take them having their own children in order to see the love that surrounds them.

Siblings of kids diagnosed with cancer get the short end of the stick. I don't have any suggestions or ideas on how to better support them. WHY? The answer lies in the circumstances. The people they need most, their parents, are largely not available to them. For long periods of time. No matter how many people step up and offer support, these people are not their parents. I have lost a solid three years of Curtis' and AnnMarie's life. Gregory is now the age AnnMarie was at his diagnosis. I can't reclaim those years. I can't undo the hurt and abandonment that happened.

I can show them love. Thankfully I have an unending supply and it's easy to offer.

To ALL the siblings. Giant heaps of unending love....
MindiTheMagnificent
~Momcologist

Five weeks before diagnosis. January 2009

Magic and Miracles

The sun is hot in the mid-afternoon Indian Summer day. He steps out of his classroom, shakes his teacher's hand farewell and stops at the top of the stoop. Scanning the sea of parents faces. Searching for me. Searching for his touchstone. I stand there and wait. It kills me to just wait. He sees me and bounds down the stairs. I drop to my knees and wrap my arms completely around his slight body. He squeezes my neck, as if to stop my breathing. It is at this point that I begin to breathe, again. We have been separated for six long hours and I long to have him within my eye sight.

This is picking up Gregory from school. He has proclaimed that I MUST wear my Momma Fedora so that he can spot me easier at pickup. I comply. Wholeheartedly. Morning drop off includes hugs & kisses, high fives and I Love You sign language, then 'just one more' hug and kiss.

We have been connected at the hip for 1,289 days. Three years, six months and twelve days. Every moment of this past time has been spent with me and if not me, my mom or his daddy. This is the first time EVER he has been in the care of people other than his family. This is a necessary step for his development. Yet, we feel our separation deeply. I can't really focus when he is at school. I flit about and cannot settle on any meaningful tasks. I know this will fade, yet....... cold and flu season is quickly approaching. I can feel my anxiety building. My gut tells me his immune system will rock this season. My brain and what I have witnessed speaks otherwise. I am cautious, I am wary, I am on full alert. We are still taking risks, though. His system needs to be challenged and we will deal with it as it comes.

I can't tell you if he enjoys school or not. If I were a fly on the wall during class, I'm willing to bet you that he is having a ball. He is making friends, has a phenomenal teacher and working with amazing materials. His life at school is vibrant. I think that being with me reminds him that we used to be together 24/7. Is he feeling guilty that he enjoys school so much? Maybe. Does he realize that a large part of my life revolves around his well being? Totally. Do we have a connection that cannot be put into words? Without a doubt. Does he get any of this on a conscious level? Not one bit.

We are taking it moment to moment, day by day. Making it up as we go along and riding this wave of survivorship.

There is an electricity when he and I walk the halls. Those that have followed us are acutely aware of how BIG it is that he is now a first grader and attending Montessori at Jefferson. Even the students are aware of how amazing his presence is. At least those that have been with AnnMarie for the last 1,289 days.

He was out last Friday with congestion and a cough. Monday was his first quarterly oncology appointment. Which meant he was out of school for two consecutive days. His classmates were concerned as to whether or not he was OK. Last Tuesday we did a Cancer Class with his classmates. It was an amazing thing to witness. We covered the basics: You can't 'catch' cancer. Having cancer does not mean that you did something wrong. Gregory was sick for a long time, but he is better now. Our fantastic social worker brought along a couple of ports and passed them around for everyone to touchy feely. The kids were fascinated. We talked about G Tubes. Gregory showed of his G Tube site and there was much 'Oooooo'ing and Aaaaaah'ing' with some 'Eww!' and a few 'You have TWO belly buttons!' One kiddo gasped and exclaimed: "Just like Mary!" His little sister had a G Tube as an infant and immediately recognized that Gregory had something in common with his sister. So incredibly touching and cool. At one point, Gregory stood up, held his hands in the air and proceeded with: "Alright. Everybody get in a line and one-at-a-time you can FEEL the line of my port that is in my NECK VEIN!" Several of the kids would not go near it, but many were completely fascinated by it. As strange as this may sound, one kid even said he wanted cancer. Remember, these are first through third graders. Everything that we had been discussing was fascinating and how else to experience all this amazing stuff, than to have the disease that brings it to you?

A friend of mine confided in me that when her son and his dad were walking home from school that day he told his dad: "When I grow up, I want to have a job where I can figure things out. Like cancer."

A conversation was started. These amazing kids allowed a tiny seed to be planted. Who knows what that seed will blossom into, but they have been exposed to something they might not have otherwise experienced. I can imagine, years down the road, they may have a friend with a kiddo diagnosed with cancer and will hopefully remember Gregory and the loving way we brought the world of childhood cancer into their lives.

Did you just call me a Pollyanna? Why, yes. I do resemble that comment. Regardless of how frickin' nasty this Odyssey is, I have this eternal hope that we have touched lives and are making an impact. Does not matter how large it is. Even if people only pause for a moment, they have taken the time to think about something that would not have crossed their lives or minds before.

The other day, Gregory and I were leaving school, as always, hand in hand. A woman and her two kids were walking behind us. Gregory exhaled a big sigh and quietly said: "I love you, Mommy." We eventually were walking side-by-side and out of the blue she blurts: "You must be so grateful that you get to walk your boy to school everyday." Her son knows AnnMarie and apparently we had a conversation at one point over at Starbucks. She had been walking behind us, watching and looking at my tattoo. Her words touched my heart and imprinted on my soul. I said to her: "You have no idea how grateful I am." I am glad that she cannot comprehend my level of gratitude. Although.... she and many other families have taken moments to pause in their own gratitude, while witnessing my gratitude. Gregory is that perfect example of 'Don't sweat the small stuff.' While at the same time reminding you to CHERISH the small stuff.

I'm not sure how long this period of amazement will last, but I'm willing to bet that it won't diminish for me. Every milestone, every day, month and year that we get to have Gregory in our lives is magical. There is no explanation as to why he has survived. There is no 'reason' for his survival. I do not believe that anyone involved with his care did anything special that affected his outcome. Even his bone marrow donor, Katie, was an incredibly LUCKY roll of the dice. So the fact that he is surviving truly is filled with magic. (Admittedly, with a huge portion of science, too.)

As much as I loath the word 'miracle', Gregory's life is miraculous.

With love, magic and wonderment,
MindiTheMagnificent
~Momcologist

First day of school!!!!!!!!!!!

First Going Out. Their Montessori Community Garden.

Letter to Fellow A101 Families

At the beginning of every school year, I compose a letter to Gregory's fellow classmates. I do it for two reasons. There are illnesses that we need to avoid and we are better able to treat with awareness. I need to know what is going around the classroom. I also feel the need to let the families know what kind of language and topics might be coming home with their kiddos. For posterity and informational purposes, I have decided to share this year's letter. 

Loving you all,
MindiTheMagnificent
~Momcologist
In honor, in memory, in defense.

Hi friends and fellow Montessori families!

This might seem a bit strange to hear from an individual family, but keep reading and it will all make sense.

Gregory Bibb is an incoming first grader in Mrs Waner's class. He is my youngest child. For those that don't know us, we have three kiddos. All of which are Montessori kids. Curtis is an eighth grader at Sacajawea and AnnMarie is a fifth grader in Ms Schmidt's class. 

Gregory is a childhood cancer survivor. In February of 2009, he was diagnosed with Juvenile Myelomonocytic Leukemia. His only treatment option was a bone marrow transplant. In June of 2009 he received his precious gift of new marrow from an anonymous donor. Gregory currently has no evidence of his original disease and is now living with marrow that also belongs to someone else. Crazy science, huh?

He is now three years post bone marrow transplant and just now starting a solid path of much better health. Without getting into too many details, his treatment and recovery are a very grueling and arduous process. 

There are two main reasons I am writing to share this information with you. The first is for your families comfort level. Gregory is not shy about sharing his story and experiences. He may have been three at diagnosis, but this is all that he has known and is simply a part of who he is. He is not shy about showing his battle wounds and equipment. He has scars from three central lines, a scar from a G Tube in his belly and currently still has a port in his chest for IV access. Your kids may come home with strange words and I wanted you all to have a heads up. I am ALWAYS available to help navigate these discussions, too. If they come to you with questions and you are not sure how to respond, please know that I am a phone call, text or email away. The word CANCER strikes fear in the hearts of us adults. Most kids have not learned to fear this word, yet, and if the come home talking about a fellow classmate and cancer, I wanted you all to be prepared.

My second reason: Your immune system is produced mainly in your marrow. Gregory has a brand new immune system. Which means he is more susceptible to illnesses. He has been well isolated for the last three years, but it's time for him to move onto this stage of his Odyssey, which includes all the germs that come from a public school. We are prepared as best we can be, but I need a favor from you. Run of the mill colds are no big deal. IF your family has Chicken Pox, Pertussis or the flu it is important for me to know. Chances are, by the time you know, Gregory has already been exposed. Which is totally OK. If Gregory does get sick, it is better for him and his treatment, if we know what we are facing. Also, if there is something like this confirmed in the classroom, Gregory will not be attending school until risk of exposure has passed. 

Are you still with me??  I am hopeful that all this will be for naught and Gregory will cruise through this new beginning in his life. Yet, the reality is that illness can really effect his body and it's important for his care for me to know what is going around. Please know that this is MY burden. Of this I am aware and deeply respect. I am an open book when it comes to this experience. Should you have any thoughts or questions, please do not hesitate to ask them. Ever. One of my favorite quotes perfectly embodies Gregory's diagnosis of cancer: "We may not live in the past, but the past lives in us." ~Samuel Pisar, Holocaust Survivor

Looking at Gregory you would NEVER know what he has been through, what his current issues are or what he may face in the future. He is so stinking excited to start school and spend time with your kiddos. Thanks for reading through this and taking it to heart. We have been part of the Montessori community for eleven years now and I am constantly grateful to be surrounded with your families.

With a love filled heart,

Mindi Finch

In honor, in memory, in defense....
Momcologist & Class of '11 46 Momma

What can YOU do to support childhood cancer?

Today is Saturday, September 1, 2012. Today begins the fast and furious 30 days of National Childhood Cancer Awareness month in the United States.

We, the childhood cancer community, have been furiously preparing for these brief 30 days. During this 30 day period, we will be advocating our buns off to the public at large.

A few facts:

• Childhood cancer is the #1 disease killer of our children in the US. 
• Every weekday in the United States, 46 children will be diagnosed with cancer.
• The ONLY risk fact for childhood cancer is being a child.
• Three out of every five children diagnosed with cancer suffer from at least one long-term or late onset side effect.

As you become AWARE of childhood cancer and how it affects our kiddos, families and communities, the question remains: 

What can YOU do to support childhood cancer?

For the 30 days of September, here are 30 really easy things you can do to support families like mine, kiddos like our son Gregory and the next 46 families that hear the words: "Your child has cancer."

1. Know that September is Childhood Cancer Awareness Month and the awareness color is GOLD. Tell your friends. Post a status to Facebook. Shoot out a tweet.
2. Donate whole blood, platelets, blood products. Our kids need a lot of transfusions to keep them alive. 
3. Find your local chapter of American Childhood Cancer Organization. They support families of kids diagnosed with cancer. List of affiliates here.
4. Hold a lemonade stand and donate the proceeds to Alex's Lemonade Stand Foundation for Childhood Cancer. Next time you are at Toys R Us, you can also make a donation at the register.
5. Donate art supplies, new toys, itunes gift cards, gift certificates for local quick serve restaurants, books, bright pillow cases, etc to your local hospital that treats kids. 
6. Hold a bake sale to benefit Cookies For Kids Cancer! 
7. Create A Pepper via Chili's Restaurant online to let people know how to support childhood cancer. 
8. Go EAT at Chili's on September 24th. This day's proceeds benefit St Jude Children's Hospital.
9. Join People Against Childhood Cancer (PAC2). 'Like' them on Facebook. Keep current on what's happening in the childhood cancer world. 
10. Ever wanted to try being bald? Shave your noggin and raise fund for life saving research via St Baldrick's Foundation. The largest private funder of childhood cancer research in the US. 
11. Sign the petition at The Truth 365, demanding that the National Cancer Institute allocate more than a mere 4% to childhood cancer research.
12. Know where your donations are spent when supporting the 'big' cancer foundations. You will be surprised. 
13. Find a Childhood Cancer Awareness Event in YOUR area and GO! Check it out, meet amazing people and be inspired. Don't have one in your area? Put something together. Big or small. Does not matter. 
14. Interested in politics? Get to know Kids V Cancer. 'Like' them on Facebook. Some amazing things have already happened and there is more to do. 
15. Your local Ronald McDonald House needs toiletries, groceries, cleaning supplies and kitchen basics. During your next Costco trip, pick up a box or two and drop it by.
16. Are you an athlete or aspire to exercise more? Run for kids with cancer with Rally Foundation!
17. Sponsor a pair of Peach's Neet Feet for a childhood cancer kiddo. THE grooviest kicks anywhere! Don't forget to 'like' them on Facebook, too. Madison and her team will blow you away with their heArt.
18. Get yourself the hippest Fedora you've ever seen. Proceeds benefit St Baldrick's Foundation.
19. Get to know 46 Mommas Shave for The Brave. Make a donation to support their $1 Million goal.
20. Support the silent and often left behind SuperSibs during Sibtember. 
21. Decided to hold your own event? Fabulous! Contact PAC2 at: info@peopleagainstchildhoodcancer.org and get that event on THE MAP! 
22. In memory of the children who have died, take a moment and reach out to a friend who has lost a child. Does not matter the nature of the death. Speak their child's name, share a memory and REMEMBER that their child LIVED.
23. Take the B+ Foundation's survey and find out how much you really know about childhood cancer. 
24. Know the facts about childhood cancer. 
25. Understand that survivors face their own unique post treatment issues. One is never 'done' with childhood cancer. 
26. Wear a GOLD ribbon. Share what it represents. 
27. Donate airline mileage points to Make-A-Wish.
28. Get swabbed. Save a life. YOU could be a potential bone marrow match for a kiddo's family desperately waiting for a glimmer of hope.
29. Know someone in treatment? Mow a lawn, provide a meal, do some laundry, offer to take care of a sibling, reach out. Make a phone call, send an email, drop a text. They are isolated and it hurts.
30. Share this list. Far and wide. We, the childhood cancer community, will not quit. Cancer doesn't care, cancer doesn't discriminate. Remember: The only risk for childhood cancer is being a kid.

Loving every last one of you. Fiercely. *RAWR*

In honor, in memory, in defense.

MindiTheMagnificent

~Momcologist

To quote St Baldrick's Foundation: