WE Are...

A Penn State Quilt! NeedleOnFull is in full swing this summer and my sewing machines are humming along. I am writing a lot, but sewing and quilting have always been my "mainstays." 

Working on this navy blue, white and grey quilt of Penn State T-shirts made me smile knowing the recipient, Kaileigh, will hopefully love it and remind her of her wonderful college days. 

Through the years in making these treasured keepsakes, memories can come flooding back with a glance at a favorite shirt on the quilt. It's a winning combination.

BSoleille! The bright side of a happy customer!

Terri

 

Teaser Trailer with Danny Health Hats

Danny van Leeuwen (Health Hats) finished his teaser/trailer today that I can share with you. As I said in yesterday's post, he has done an amazing job with interview us about our family's cancer journey for over 20 years. I stumbled with my words, but the essence of what I said, or tried to convey, stood out (or at least to me it did - but hey, I live it.) 

Bill, Olivia and Ryan did a stellar job of articulating the answers posed to them by Danny in a clear and concise manner. I am over the moon and so so proud of them. 

It's 2 minutes long. I hope you will check it out:

https://youtu.be/7S_ysTJ9oZw

BSoleille!

Terri

Podcast with Danny Health-Hats

My family and I were interviewed over a series of calls in the last couple of months with Danny van Leeuwen, a health provider (retired nurse) and health advocate. Danny, who also has his own health challenges, loves to seek his own education in the realm of, not only advocacy, but the role of a caregiver, epatient, Family man and podcasts. We were thrilled to be introduced to Danny by another podcaster, David Bourne, who Bill and I met in the Writing In Community Class we took in 2020. David felt our story would resonate well with Danny's podcast. He was so right indeed. 

Danny first interviewed me, then Bill, then the kids. Initially I think the podcast was going to highlight what the parents went through, but as Danny asked us more questions, he learned very quickly that interviewing Olivia and Ryan would be best for the type of podcasts he does. Frankly, for us, it was a family affair. Danny had the foresight to incorporate our entire family for this two-episode podcast: Honor Supporting Cast, the Stars of Disabling Conditions. Danny is an excellent interviewer and drew out the nuggets of gold from each one of us as we described certain events, feelings and coping mechanisms. 

Yesterday, I posted this podcast straight to Facebook, but I wanted to add some color/context on how we got on Danny's podcast.

Here is the first of two podcasts highlighting large swaths of The Focused Fight is 37 minutes long. Take a walk and be transported as Danny brings out the best in each of us. 

https://health-hats.com/pod130/

BSoleille!

Terri

ATTENTION Northeast Ohio - The Focused Fight Launch and Party

Dear family, cousins, friends, co-workers, high school & college friends, please join me next month for a book party - even if you did not read the book. I'd love to see you! A great reason to celebrate summer. I will be able to answer questions (with Ryan/family too), read a few passages from the book and talk about the process of self-publishing if interested.

I think I've mentioned previously that as I self-publisher, I am also a self marketer and publicist. My goal is to reach One Person or One Family at a time, a sort of ripple effect. It is happening and I am thrilled.

Next month on Saturday, July 24th from 2-7pm, The Focused Fight Cleveland Committee is hosting a book/launch party at the Club House in the New Hampton Development in Broadview Heights, Ohio. Preliminary details: everyone is invited and welcome. If you purchased a book and want it signed, I can do that (Ryan too). I will also have books available for purchase on site. Food, beverages and desserts will be available. 

A few more postings will be sent out via Facebook Invite and my blog. The address in New Hampton is 1421-1461 Hamilton Dr., Broadview Heights, Ohio, 44147. 

Northeast Ohio, I hope to see you soon!

BSoleille! #TheFocusedFight

Terri

Aziza's Launch Luncheon for The Focused Fight!

Aziza’s Army Luncheon

My plan is not to bore you with the ancillary work in self-publicizing, but I had to give a shout out to the other Cancer Fighting Moms I know and love through our common denominator: Childhood Cancer. Today, eight of us met for brunch along with our fearless leader, Dr. Aziza Shad. We were there to not only celebrate the launch of The Focused Fight, but also a birthday amongst us, and the fact one of our cancer survivor children (she’s in her mid-30’s) had her second baby two weeks ago (a miracle!).

We were the first ones to arrive at the restaurant and spent over three hours talking, catching up with our lives (not even the cancer kids except for the new baby’s mama), swapping stories and laughing harder than any other table in the place. That adage, “I’ll have what she’s (they’re) having,” was about it when our table erupted in uncontrollable laughter on several occasions.

All the ladies attending today played a role in the power of community, as in our tight-knit cancer community at Georgetown University Hospital all those years ago. They brought me meals, held my hand when going through a rough patch, and served on boards with me at the hospital. Every single one of them is gracious and humble, and their lives are full of gratitude—my kind of people.

I am getting the hang of this type of celebration with more photos and videos to post. The best thing: to be able to touch the moms with our story, as they too, reminisced about their own challenges with their child and beyond.

BSoleille!

Terri

I shout of thanks to Beth, Donna, Michelle and our waiter for the photos/video! 

https://youtu.be/F2DXxtrgNuY - a short video of me talking about The Focused Fight

Brushing Up Quilt Skill - Paper Piecing

I'm not fond of paper piecing but it is required for a set of blocks for one of our shoe box swappers. As a quilter for over 30 years, I've done very little paper piecing. My brain was stretched as I used the technique needed to make each block. Luckily, I took my assigned month for Marjorie's blocks called: Worlds Without End to IRL bee this week. There I had three other bee-mates help me get started and coach me as I sewed each 6" block. Frankly, it was learning (or aptly, re-learning) how to do the first one, the others fell into place with nary a problem. It's that whole thing of lining up fabrics to paper and making sure that right sides are together; a lot of geometry. One bee-mate offered to make the blocks for me, but I couldn't or wouldn't relent that easily. 

I wanted to overcome that uneasy space and challenge myself no matter how uncomfortable that was. Sure, I was frustrated with the first one, but after I figured it all out on my own it was smooth sailing to the finish. 

From now on, whenever I see a paper pieced quilt, I will genuflect to the quilt and quilter (if around). I know how difficult it can be (especially with little pieces), but the final product is amazing with crisp, if not perfect points and a sense of accomplishment! Four 6" blocks took me awhile, but it was a great exercise to shore up, brush up, with the skill of paper piecing. 

BSoleille!

Terri

Countdown to 3,000 Posts

Today marks 190 days left of 2021. If I blog everyday until the end of this year, I could accomplish a goal of 3,000 posts in 10 years, with six days built in to play with (read: take off). This is a good challenge for me. In the first year I started it, 2012, I never missed a day. Yep, I blogged 365 days in a row. I sweated it out on several days once the clock hit 11:30pm, then 11:45pm and a frantic last 15 minutes to get out the post before I turned into a pumpkin at midnight. 

If The Little Engine That Could book's signature phrase is: "I think I can," I can too. Hey, I've proven once before that I can do it. Easy, right?

Well, I've swung the gauntlet down on myself. There are no rewards except the challenge I put forth, and hopefully, accomplishing the goal this coming New Year's Eve. It will be a day to celebrate for sure. Today's post is my 2,819th. 

You can bet that the best I can do it try each day. I promise you (and myself) I will.

BSoleille! The bright side of not letting the sun go down on me...(Elton John)

Terri

Sunset over Chicago from the Indiana Dunes — 61st US National Park

Welcome Summer 2021!

I just love rolling off my tongue; summer solstice. There is something lyrical and magical about, as well as it is my favorite season of all–even hot humid days. Our day in the Mid-Atlantic started off with a 5:41 am (not up yet) sunrise, but our day of sun got cut short by a huge thunderstorm that wielded it's way through the area, cutting off the longest day of the year in sunbeams to Earth. But I'll take it.

Last year I strapped myself into a dining room chair to write and write and write some more. Bill too. We took a lunch break and a walk/run around the Crofton Parkway most every day. Everything was tentative. The most weird summer of my life. I really wanted the summer of 2020 to be special. It was in a whole different way by losing my mom in July and a raging Virus. 

Hopefully, we can celebrate 2021 like today's Solstice, June 21, 2021. A different year. Different dreams. Summer plans in the making for fun in the sun. 

BSoleille!

Terri

Photo by "The Best Daughter" of making a splash in our local pool by swimming laps (though foot cramps and leg cramps did stop me in my "tracks/lane.") 

Happy Father's Day 2021

Happy Father’s Day to one and all! This well-deserved holiday celebrating all the dads and grandpas is terrific! I hope each dad enjoyed their day, had a good meal or perhaps watched the exciting finish of the US Golf Open Final round in Torrey Pines, CA. All in a (Dad’s) days work, right? No mowing the yard at least for today. We spent a couple of hours at the local pool. Of course, Ryan smoked a delicious chicken and I made a big garden salad, AKA around here as a BGS!

Also thinking of my own dad (John) who has been gone for 20 years this past April I miss him for sure!

Sunshine, Water and a Butterfly

I am over the moon that I've been able to get back into our local pool to swim laps. It was my first time swimming in 2021 a couple of days ago. When I pulled into the parking lot I happened to notice a lot of cars. It was late afternoon, the sun was up and hot, and it was nearing dinner time. I was still clueless to the loud screams coming from the pool and knew there couldn't be a swim or dive meet that soon after the pool opening Memorial Day Weekend. What I didn't realize, or totally forgot, was I went to swim my measly laps smack dab in the middle of swim and dive team *practice*.

I looked at my watch when I first entered the pool deck - 5:15pm. I asked three lifeguards when practice will be over and they didn't know. The temperature was 91 degree Fahrenheit and I wanted to get in the water. The fourth guard on the chair was able to reveal that they'd be done by 6pm.

I hesitated for a moment on whether I'd turn back and go home, or wait it out 45 minutes where all the screaming mimis would be exiting the pools and going home for dinner. Of course my swim bag had the necessary gear as goggles and a towel, but it was also laden with a magazine and my current book—*Wired For Story* by Lisa Cron. I decided to jump into the book first.

That laughing, screaming and 100 kids splashing in the water were tuned out once I started reading. I never heard a thing, which is something my mother or my family can't figure out that I can really tune out everything else when I read—even music.

As it neared the magic hour of 6 bells, I carefully put on my new goggles and stood at the pool edge waiting for the last swimmer to exit "my" lap lane. Once his last foot was out and up on the deck I jumped in the coolish water. In no time my swim stroke was in rhythm and I felt marvelous! I took it easy this first time out. My plan is to build up 10 laps each time out until I reach 64 laps, or one mile, where I'll stay for the rest of the summer.

The rush of the water over my back with each stroke felt divine. I am home in the water. There's nothing else like it. However, all good things must come to an end (or the body confirms it's time to exit). I gathered my belongings and left - it was time for me to go home for dinner.

As I walked out toward the parking lot I noticed the tall daylilies on the path stretching as far as they could go. In fact, some were so tall they almost touched my shoulders. I was feeling exhilarated from my workout and happy. My attention became more mindful of the daylilies. I noticed a "flick" coming from one I almost brushed against. I saw it from the corner of my eye and stopped to check.

I am so glad I stopped. The “flick” was a beautiful swallowtail butterfly, nose down in the middle of the flower. He or she was sucking out the nectar like it was their job (perhaps it is!). I continued to watch and silently pulled out my phone from my bag, my intent to hopefully capture the moment without him or her fluttering away.

The photo below is the tender moment that I was able to share in with one daylily, one butterfly and me. A magical moment indeed!

Thirty-four Years of Manufacturing Sunshine and a Whole Lot More!

With this guy named Bill Tomoff - TODAY! Happy Anniversary to US!

Like the Barry Manilow song says, “It Looks Like We Made It.” We sure did. I’m betting we have many years ahead for more fun and adventure starting down our 35th lap together—hands clasped or double fisted in the air pumping wildly and cheering each other as a couple…and as individuals. The roller coaster of life…and marriage!

We all know, and have read that marriage has its ups and downs. But with our team approach coupled with deep love, commitment and respect for each other all these years, certainly helped us from the moment we said our “I do’s.” Looking back and pulling out another song, “Reminiscing” by the Little River Band (it so happens I’m full of song today), we’ve not only manufactured a hell of a lot of sunshine the past 34 years, but rain, snow and sleet whenever it was needed. I like to think the two of us has weathered the weather (not necessarily what is happening out-of-doors, rather the climate within our bubble) more times than we’d like to admit.

Our daughter, Olivia, spent some time with us this weekend, getting a quick walk around the Crofton, Maryland Parkway (4 mile loop) to “celebrate” with us. Our son has designs on making us a delicious meal on the barbie. I couldn’t justify going out for dinner when Ryan’s delicious meals and cooking skills put most restaurants to shame (and we know the ingredients that are in/or not in for healthy eating!).

BSoleille!

Terri 

Volunteering at Camp Fantastic Registration at NIH

Lockdown run around the Crofton Parkway April 2020

Special Love's Parent Getaway Weekend-Winchester, VA

 

White Oak Canyon Trail, Syria, Virginia

Battle of leagues: Washington Nationals gave vs. Cleveland Indians

#CelebratingOthers with Christine Flanagan - Recent Bone Marrow Donor!

In my recently self-published memoir, The Focused Fight, on page 172 I mention that if an age qualifying person donates saliva through a cheek swab, they could eventually become a bone marrow donor. There is a 1 in 430 chance to donate blood or marrow to save someone’s life. On Thursday, June 10, 2021, a born and bred Crofton, Maryland, 29 year-old lovely young lady by the name of Christine Flanagan, donated her blood and plasma (PBSC or peripheral blood stem cells) for a child with cancer. Her efforts in sitting in the hot seat at Georgetown University Hospital manufacturing sunshine through her blood donation...was all to save a life! 

The same blood-forming cells that are found in the bone marrow are also found in the circulating (peripheral) blood. The only detail Christine knows and shared is that the recipient is a 16 year old girl living in the United States with a diagnosis of ALL (Acute Lymphoblastic Leukemia—same as Ryan’s). She told me that our family’s story and Ryan’s cancer journey inspired her to do the cheek swab at University of Maryland Baltimore County Campus (UMBC) donor drive, as well as the free Chick-fil-A sandwich coupon given to every student that walked through the clinic doors. Free food will catapult a starving college student to donate a quick cheek swab hands down. No one at that age realizes they could be called up for duty despite the free sandwich giveaway. When Crofton had the huge bone-marrow drive in 2004, Christine was 12 years old then and not old enough to be in the registry (need to be 18 years old to register).

Christine was a PBSC donor (blood removed from one arm and then after apheresis/through a machine) the blood goes back into the other arm) instead of a bone marrow donor. She revealed that her procedure took (5) hours, a lot less than the typical donation of close to (8) hours. Apparently, she has good polys (large white and red blood cells - especially for a woman). Christine further explained that for (5) days leading up to her blood procedure, she had to be given injections of filgrastim to increase the number of blood-forming cells/stem cells in her bloodstream. She admitted that the shots were the hardest part compared to the donation, but was extremely honored that she was a great match for someone, somewhere.

The entire process was about two months. Christine was first notified on April 1, 2021 that she was a potential match. Further testing was needed to confirm she was a good and viable candidate. When she was processed into the program, time passed quickly until her donation this past week. 

Our family has known Christine and the rest of the Flanagan family since we moved to Crofton in 1996. She is one of five children born to her parents, Georgia and Richard. She is the second oldest of three girls, then two boys followed up to round out the crew. They are all awesome and we’ve remained close to them throughout the years. Her dad, Rich, in fact, has three Guinness Book of World Records on a wheelie/one wheel (bicycle).  He dedicated one of his rides to Ryan in May of 2016. If you’d like to read more about this feat - please click on my older blogpost.   https://quiltsfromtheheart.blogspot.com/search?q=richard+flanagan

All the Flanagan kids are great athletes. Christine and our daughter, Olivia, played on the same local soccer for a couple of years, as well as swam on the local pool's swim team. A grade ahead of Olivia, Christine graduated high school in 2009 and then graduated from UMBC in 2013 with her degree in psychology. She currently works for the Applied Physics Lab in Columbia, Maryland, as a financial manager. She loves her job and is good at it too. She currently lives in Annapolis, Maryland, with a couple of roommates and her dog, Cliff, a German Shepard mix. She added she has had a wonderful childhood and is enjoying her life and adventure at every turn. Her greatest joy is being Aunt ‘Tine (pronounced Teen) to five nieces and nephews (some cannot pronounce Christine!).

If my family is excited and proud about Christine’s recent PBSC donation, her family is off the charts happy and very proud of her too! Who wouldn’t be? 

Due to Be The Match’s https://bethematch.org/ time constraints on when a donor and recipient can meet up (after one year from transplant), they are, in fact, allowed to write cards and notes to each other anonymously through their cancer centers. Christine plans on doing just that—keeping in touch. She added that she will wait patiently through the next nine months because after that time period ends, she will be able to get an update on her recipient. 

I hope and pray this all will be a miracle! When they meet up eventually, my hope is through Christine’s willingness to donate and create sunshine for someone else, she will be able to see how her donation brought sunshine (life) into a 16 year old girl with a new lease on life!  

Christine with her Red Stem Cells

Red stem cells and White Plasma (recipient needed plasma too)

Flanagan Clan

Christine and Cliffy

Oh What a Week! Kelleys Island Respite 2021

Remember those vacations of years past, and last year a bust for many? Hopefully, not this year as we are ready to move about the cabin...and more. A trip to our beloved Kelleys Island, Ohio, was a perfect segue to get back on the horse of being with our tribe of family and friends. Except for one day of liquid sunshine, we had a grand week of stellar sunshine (mostly) with fun, laughter, bike rides, visits and the KI annual 5K and 10K races. A good time was had by all. 

Laughter...what a great medicine!

BSoleille!

Terri

Can't beat an Ohio sunset (#nofilter) 

Shell Beach, Lake Erie with Tom/Rosalie Franek and Jodie Smith

Jodie and me

Go Speed racers! 5K and 10K'ers

Welcome to Lake Erie - Rosalie and Tom

Last dinner together at the Island House Restaurant

Medal winners/placers: Olivia (5k); Rosalie (10k); Beth Tomoff (10k) Bill (5K) in their respective age brackets!

#CelebratingOthers with Susan Myhr Fritz's Memoir Recently Published!

Bill and I had so much fun writing in the Akimbo's Writing In Community 1 and that signed up for WIC2 over two months ago. We 'met' people all over the world writing powerful words with the hope that those words will be published. It's a big deal for that day to finally arrive and I would like to shout out Susan Fritz with her moment this past week.

Hot off the press is Susan Fritz’s memoir Everything Relevant Has Already Been Said. A Cancer Love Story. Susan’s book was the first thing packed in my backpack for our vacation. Now it’s a toss up on who reads it first and we are “fighting” over who gets that pleasure. From the photo below, it looks like Bill has the advantage. Not so fast.

On the Kelleys ,Island with Lake Erie all around us, unpacked, fed and watered I'm ready to sit back with a good book- Susan's book. A nice bike ride around the island is already under our belt too. 

Bill and I are thrilled for Susan and her book that is now out to share with the world! Her words are poignant, powerful and very “Susan-esque.” 

I can’t wait to dig into it pronto! 

BSoleille!

Terri