Jared's Quest for a DIPG cure

Jared's Quest for a DIPG cure Jared is a 7 year old little boy who has been diagnosed with DIPG in November 2014. Diffuse Intrisic Pontine Glioma is an inoperable brain tumor.

sadly he passed away à little after his eight birthday. Jared was diagnosed at just 7 year old with DIPG on November 25, 2014. He was an active little boy who enjoyed soccer, swimming, and hockey. Jared loved to sing, pretending to play guitar or piano. His favorite color was red, he like watching superhero cartoons on tv. Like all parents who end up in the ER with their child, you do not expect a diagnosis like DIPG. We originally thought he had a concussion from playing hockey, or perhaps an ear infection. The diagnosis was a shock. Devastated by news of the diagnosis, we started treatments radiotherapy as we were told this is the standard treatment route. As we learned more about DIPG, we realized that our options were very limited and our time was running out. This is not an operable tumor and chemotherapy has proven ineffective. There are clinical trials going on but nothing is proven and no cure is available to date. We tried boosting his immune system, using combination of alternative therapies and vitamin C injections. Jared finished 6 weeks of radiation therapy in January of 2015, and approximately 6 weeks after it ended, we were happy to learn that the tumor was reduced by more than 50%. Unfortunately this good news was short lived. In June 2015, we received the news that an MRI showed that other tumor sites were forming. We enrolled in a trial using Keytruda at Cincinnati children hospital. So from Montreal we drove down to meet with the team. On our first day there, we did an MRI and unfortunately, the news was not good. His brain had swollen and the trial could not go forward as this drug would have caused further swelling. So we rushed back to Montreal to meet with his doctors to see of our possible options. The day after Jared smarted having convulsions, he was admitted to the Montreal Children’s where a shunt was placed. After this procedure, Jared never really regained consciousness. Unfortunately, Jared gained his angel wings on Sept 28 2015. Our sweet little JaJa will always be in our hearts and never forgotten.

11/05/2024

Acknowledge feelings: Encourage children to express their feelings and acknowledge any concerns they have about death.
Be patient: Children's grief may not be obvious right away.
Use simple language: Avoid euphemisms and use direct language.
Ask questions: Ask exploring questions instead of giving answers.
Be a good observer: A bereaved child's behavior can indicate their emotions.

Sad but true !
10/05/2024

Sad but true !

Childhood Cancer is scary. It kills more children than all other diseases combined in the USA.

Our Little Jaja would have been 17 years Old.  Hard to imagine it's been 9 years already since he became an Angel.  We  ...
09/28/2024

Our Little Jaja would have been 17 years Old. Hard to imagine it's been 9 years already since he became an Angel. We miss you Jared.

I guess this says it all about funding for children cancer.
09/08/2024

I guess this says it all about funding for children cancer.

According to the National Cancer Institute (NCI), "Cancer in children and young adults is different from cancer that develops later in life. Childhood cancers usually do not act like adult cancers and are not treated the same way." Why have we developed and approved more that 220 cancer drugs for adults, while the FDA, through 2023 has approved a total of 42 drugs for use in the treatment of childhood cancers. 35 of the 42 drugs were originally approved for adult use. Today we have only seven drugs that were approved in the first instance for use in cancer treatment for children: 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) and eflornithine (Iwilfin) (2023 for HRNB). More facts are available from the Coalition Against Childhood Cancer Fact Library https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/

This is a great story.  I had the privilege of meeting the parents, sadly, while our kids were fighting DIPG.  They cont...
01/24/2024

This is a great story. I had the privilege of meeting the parents, sadly, while our kids were fighting DIPG. They continue to be non stop fighters for this cause. This is a great way to help all parents strugling with sick children and remembering Kat.

A new “home away from home” will open in Montreal for out-of-town families whose sick children are receiving care at the Children’s Hospital.

September is children cancer awareness month.
09/06/2023

September is children cancer awareness month.

Various pictures of Jared and his brothers. First day of school , Halloween, daycare , Soccer practice....we miss our li...
08/29/2023

Various pictures of Jared and his brothers. First day of school , Halloween, daycare , Soccer practice....we miss our little JaJa !!

Some interesting news on how to open the Blood Brain Barrier.   Now lets see what chemo cocktail  agents will respond to...
01/11/2023

Some interesting news on how to open the Blood Brain Barrier. Now lets see what chemo cocktail agents will respond to DIPG.

Canadian physicians have successfully used MRI-guided ultrasound to deliver chemotherapy to an inoperable brain tumour in a child – a world-first for this type of technology.

Address

Montreal, QC

Alerts

Be the first to know and let us send you an email when Jared's Quest for a DIPG cure posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Jared's Quest for a DIPG cure:

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram