As many of you may already know, my husband Brock and I lost our daughter, Madeline, to Diffuse Intrinsic Pontine Glioma (DIPG) on February 2, 2019, two months shy of her 10thbirthday. DIPG is one of the most aggressive and devastating brain tumors, predominantly affecting children between 5 and 10 years of age (if you would like to learn more about DIPG, I have included specifics about this disease at the end of the blog).

Last month, Brock and I decided to join forces with the Tough2gether Foundation, a community of fighters with a mission to provide much needed funding to DIPG research and clinical trials. This foundation hopes to someday put an end to the atrocity of DIPG and Diffuse Midline Glioma (DMG)!

While recently writing a poem for my Yorkie-baby, Pippin, who passed away in May of 2019, a fundraising idea for Madeline and for DIPG blossomed! We hope many of you will be interested in helping us with this fun campaign!

Have you lost a loved one and wanted to do something special to memorialize and honor their memory? Have you ever wanted your writing published? Have you wanted to own a book with YOUR work published inside? Here’s your chance!

Share Their Story: Poems Echoing Love and Loss - An Anthology, Volume 1, is hopefully the first volume of many volumes to come. Here’s the idea: Anyone who has grieved the death of a loved one may submit a short bio and poem (template included at the end) written for their lost love. Most of us have experienced the death of a loved one, whether a grandparent, parent, foster-parent, sibling, aunt, uncle, cousin, friend, fur-baby, child, teacher, etc. If their life was meaningful to you, write about them! Though not required, if you wish, you may also include a black-and-white picture with your work.

No experience writing poetry? NO PROBLEM!

There are many ways for beginning writers to get started. Some ideas may include:

· writing a poem as a family or in a group;

· choosing to make your biography section longer and keeping your poem short and sweet;

· brainstorming the topics and ideas you wish to include in your poem first, giving yourself a general direction, before adding any pressure on rhyme, meter, or stanza; or

· choosing your poem style first and then Googling basic examples of that style to develop a better understanding of what you want your poem to sound like once complete.

Try one of the following poem styles that are great starters for new poets:

· free verse poetry has no specific rhyme scheme or meter, allowing for complete freedom of expression. Beginners can start by writing freely without worrying about adhering to any formal structure;

· haiku is a traditional form of Japanese poetry consisting of three lines with a syllable pattern of 5-7-5. It often focuses on nature and the seasons, making it accessible for beginners to experiment with imagery and concise expression;

· acrostic poems spell out a word or phrase vertically, with each letter serving as the beginning of a line. This form provides a structured framework for beginners to organize their thoughts and explore different themes;

· limericks are light-hearted and humorous poems consisting of five lines with a specific rhyme scheme (AABBA). They often feature playful language and witty wordplay, making them fun for beginners to write; or

· couplets are pairs of lines that rhyme and often work together to convey a complete thought or idea. They are simple yet versatile, making them a great starting point for beginners to experiment with rhyme and rhythm.

Other types of poems include sonnets, ballads, epics, odes, villanelles, and concrete poetry, to name a few.

Why Poetry?

Writing and sharing poetry allows individuals to express their emotions and process their grief. It can be a therapeutic outlet for handling complex feelings associated with loss. Ultimately, writing poetry after a significant loss is not just about expressing grief; it's about embarking on a journey toward healing. The act of creating something beautiful from pain can be profoundly empowering. It acknowledges the depth of the loss while also celebrating the resilience of the human spirit.

In the midst of loss, poetry can be a beacon of hope. It shows that from the depths of sorrow, something meaningful and beautiful can emerge. Whether through crafting a simple haiku or an elaborate free verse, writing poetry can be a deeply healing practice for those navigating the complex landscape of grief.

The Professional Editing Process:

I am proposing developing a book that is self-published on Amazon; therefore, some amount of editing will be necessary. However, poetry is a very subjective form of writing, so copy editing or line editing are generally not recommended. Since line and copy editing can alter the author's delivery or voice in a way that changes the tone of the poem, professional proofreading for poetry is instead recommended. Proofreading identifies errors in punctuation, spelling, grammar, capitalization and verb tense. When turning in your Manuscript for professional proofreading, it must meet the following specifications:

· English language only

· File Type: Microsoft Word format (.doc or .docx)

· Page Size: 8.5x11”

· Page Margins: Set to 1” on all 4 sides left, right, top and bottom.

· Font Type: Times New Roman

· Font Size: 12pt.

· Line Spacing: Double

· No mark ups or track changes on file

· Remove all images and replace with placeholder text, for example [image 123.jpg goes here]

· Use these specifications to determine the number of pages of your final manuscript. The cost of professional proofreading is $3 per page.

If you would like segments of your manuscript to have more in-depth editing, then you may want to consider line editing or copy editing. For example, if your writing included a shorter poem and a longer biography, then you may want your biography portion to include more than a proofreading service.

· Copy editing makes sure manuscripts meet industry standards and focuses on consistency in story elements, spelling, grammar and syntax, missing words, writing style, overlooked mistakes or vague statements. Copy editing is $7 per page.

· Line editing focuses on writing style and creative elements. While they will catch simple grammar errors, their main focus is on over-used words, run-on sentences, redundancies, shifts in tone, inconsistent phrasing, confusing dialogue, and improving pacing. Line editing is $10 per page.

Manuscripts may then be submitted to my work email at stacy.ah.remy@gmail.com with the subject line Share Their Story. Further, send me the amount necessary, as indicated above, to my business / charity Venmo account Share Their Story – Poems Echoing Love and Loss@specialascanbellc.com.

When I have your manuscript and the money for editing, I will submit your manuscript for proofreading or editing before returning it to you for final approval.

Poems will be organized into a 6x9 paperback blueprint. I will design a front and back cover, write a short poem on grief and loss, include a few pages of internal artwork including pertinent quotes, a brief Prologue with information on grief and loss and an Appendix with information on DIPG and the Tough2gether Foundation. I’ll compile everything into the book for self-publishing on Amazon via Kindle Direct Publishing. People can then buy the published book with their own memento to their lost loves included.

One Hundred Percent (100%) of the proceeds will go to Tough2gether Foundation! Check out their website to learn about all the necessary aid they provide the DIPG / DMG community at https://tough2gether.org/.

Join us in the fight and help us be “Tough2gether because of Madeline!”

More about DIPG / DMG:

DIPG is an aggressive brain tumor mostly affecting children. It is located in the pons region of the brainstem and is notoriously difficult to treat due to its diffuse nature and critical location, as the brainstem controls many of the body's vital functions.

DIPG arises from the glial cells in the pons, a part of the brainstem that plays a crucial role in relaying messages between various parts of the brain and the spinal cord. The term "diffuse" refers to the tumor's tendency to spread out within the pons, intertwining with normal brain tissue, which makes surgical resection impossible. Clinically, DIPG is often diagnosed based on imaging studies such as MRI, which typically reveals a diffusely infiltrating mass in the pons.

Children with DIPG usually present with a rapid onset of symptoms due to the tumor's impact on the brainstem. Common symptoms include cranial nerve dysfunction (leading to facial weakness, double vision, and difficulty swallowing), motor deficits (such as weakness or problems with coordination), and long tract signs (including changes in sensation or paralysis). The disease progresses quickly, often within weeks to a few months, leading to severe neurological deficits.

The treatment options for DIPG are severely limited. Radiotherapy remains the mainstay of treatment, often providing temporary relief from symptoms and modestly extending survival by a few months. Unfortunately, the benefits are usually short-lived, with most tumors progressing within months after treatment. Chemotherapy and targeted therapies have largely been ineffective, as the blood-brain barrier and the tumor's genetic heterogeneity pose significant challenges.

The prognosis for children with DIPG is grim, with a median survival time of less than one-year post-diagnosis. Long-term survival is rare, and the 5-year survival rate is less than 1%. The dire outcomes underscore the urgent need for more effective treatments and a deeper understanding of the disease's biology.

Recent research efforts focus on novel therapeutic approaches such as immunotherapy, targeted molecular therapies, and convection-enhanced delivery methods to directly administer drugs to the tumor site. Recent advancements in genomic and molecular profiling have begun to shed light on the underlying mechanisms driving DIPG. Mutations in the histone H3 gene (H3K27M) are found in the majority of DIPG cases, leading to dysregulation of gene expression and tumorigenesis. These discoveries have opened new avenues for targeted therapy research. Clinical trials are ongoing, investigating drugs that can specifically target these mutations or modulate the tumor microenvironment to enhance treatment efficacy.

However, we desperately need more funding for research and clinical trials! In the United States, government funding for DIPG research is not clearly delineated in publicly available budget documents. Generally, childhood cancer research, including brain cancers like DIPG, receives less than 4% of the total federal cancer research budget, with an even smaller fraction specifically earmarked for DIPG.

Funding has increased in recent years, primarily driven by private foundations like the ChadTough Defeat DIPG Foundation, The Cure Starts Now, The DIPG DMG Research Funding Alliance and Tough2gether Fighting Childhood Cancer Foundation. The ultimate goal is to transform the prognosis of DIPG from a nearly certain fatal diagnosis to one where long-term survival and quality of life are achievable realities for affected children and their families. It is with these foundations working collaboratively, and on a global scale, that we finally have hope and a chance that a cure is within our reach!

Template with Instructions

(Instructions will be omitted from final manuscript)

B&W Photo if desired

Name: Name of Lost Love

Date of Birth—Date of Passing

Tell us about Name of Lost Love: (This is a space to provide information about your lost loved one. This section can be as long or short as you choose; however, I recommend keeping it to several paragraphs and making your poem the primary focus. Describe what it meant to you having this person / pet in your life. For example, why their life was meaningful, funny anecdotes, or unforgettable reminiscences’.)

Title of Poem by Name of Author

Personal Poem

Electronic Signature

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