Martha's Squad Fighting Kids' Cancer

10/31/2023

Halloween can be a difficult day for families who have lost a child and for families with a child in cancer treatment -- please keep them in your thoughts today as you cherish the memories you make with your kids and neighbors 💕

05/08/2023

If your child has passed away from childhood cancer and you would like to add his or her name to the Beacon and T-Shirt please email us with your child’s first and last name only (no middle name) to:🎗[email protected]🎗
Last day to submit your child’s name is JUNE 1st.

The Lake Nona Beacon is lighting up our angels’ names on Saturday, September 9, 2023 at night time only and only on this day. Our event will be from 7 pm-9:30 pm.
Please RSVP on Eventbrite https://www.eventbrite.com/e/in-loving-memory-at-the-lake-nona-beacon-tickets-618017295367?utm-campaign=social&utm-content=attendeeshare&utm-medium=discovery&utm-term=listing&utm-source=cp&aff=escb

We have blocked hotel rooms at the nearby Marriot hotels (there are 2 hotels available) for $169 a night for all families who want to stay for the weekend. Link: https://www.marriott.com/event-reservations/reservation-link.mi?id=1681250636459&key=GRP&app=resvlink (If your travel plans bring you in 2 days before the event or after, please email [email protected] and we can help work something out.)

This year we will be selling tshirts with the Angel names on them. We will be selling the tshirts online ONLY so they can be purchased before the event and you can wear them to the event!

If you have already submitted your child’s name in previous years there is no need to do so again as their name remains on there forever. If you have any questions at all please email us! Thank you 💕🎗️🎗️

09/14/2022

Something that many people are often not aware of is that childhood cancers do not act like adult cancers, they are not the same and must be treated differently.

One of the major keys to beating childhood cancer is researching and developing better drugs that are specifically designed for children, teenager & young adult's developing bodies that leave healthy cells alone while destroying cancerous cells.

While hundreds of cancer drugs have been developed and approved for adults, the FDA, up to and including 2020 has approved a total of 34 drugs for use in the treatment of childhood cancers.

However, 28 of those 34 drugs were originally approved for adult use only. That's right, an infant, toddler or teenager can get a chemotherapy drug that was originally designed and approved for an adult. Many of the adult drugs now being used for children cause severe late term side effects. Some of those that are routinely used like Methotrexate and Cyclophosphamide were approved over 60 years old. Vincristine, which is also widely used, was approved in 1963.
What chance do our kids have when they are up against such archaic treatments?

Survivors of any kind of cancer can develop health problems months or years after cancer treatment, these are known as late effects, but late effects are of particular concern for childhood cancer survivors because treatment of children can lead to profound, lasting physical and emotional effects.

Today, we have six drugs in use that were approved in the "first instance" for use in cancer treatment for children, they are;

*Teniposide (1992 for ALL) now discontinued and not in use

*Clofarabine (2004 for ALL).

*Dinutuximab (2015 for NB).

*Tisagenlecleucel (2017 for ALL).

*Calaspargase pegol-mk (2018 for ALL).

*Selumetinib (2020 for NF1).

*Naxitamab (2020 for NB).

These are the ONLY drugs that have EVER been developed and approved for use in the first instance for children.
Yes, EVER
EVER EVER EVER
In the whole history of cancer drug research, clinical trial and FDA approval
We are sure more are in the pipeline, but......

We desperately need to develop more drugs specifically for children that will not have such life-altering consequences.

Awareness is key
It's where we start.....

09/14/2022

When people ask me what’s my favourite of everything I’ve done this is usually the answer, I’ll never get tired of looking at it.

09/13/2022

09/04/2022

What you don’t see...
by Rachel O'Neil

You don’t see loneliness of child not at school.
You don’t see the heartbreak as lifelong friends stop answering their calls.
You don’t see the sadness of a child who can’t play out.
You don’t see the pain when when they miss the latest event or outing.
You don’t see the embarrassment when the appearance has changed and the hair disappears.
You don’t see the resignation in their eyes when the next round of vomiting, seizures & problems begin.
You don’t see the exhaustion so severe they no longer cry at the pain.
You don’t see the sheer hard work when they have to catch up.
You don’t see the devastation and loss at sudden new and lifelong disabilities.

You don’t see the tears, the isolation, the depression, the desolate, brutal destruction of that child with cancer .....day after relentless day....

You don’t see the sibling uprooted from routine.
You don’t see them passed to relatives or or friends for days, weeks, months..
You don’t see the disappointment when there’s no one there for them at the school assemblies and events because they are miles away in hospital.
You don’t see the loneliness without mum to cuddle it better, grandmas are good but they just aren’t mum.
You don’t see the sheer raw fear on their faces when they see their siblings for the first time during treatment.
That terror again with subsequent sudden trips off in ambulances leaving them at home bewildered.
You don’t see the struggle and anger as they have to continue on at school trying so hard to focus on work.
You don’t see the jealousy because they are left out when the treats and presents and amazing things come.
You don’t see the confusion trying to comprehend a sibling is now terminal.
You don’t see the long term emotional damage done.

You don’t see the tears, the isolation, the depression, the desolate, brutal destruction of that child with cancers sibling .....day after relentless day....

You don’t see all that cancer takes from them.

Rachel O’Neil
Mum to a Cancer Warrior Angel & his Amazing Brother
Team Reece Children's Brain Tumour and Cancer Charity

09/02/2022