Robert J. Michalski Memorial Fund

Robert J. Michalski Memorial Fund

100% of funds raised will go toward pediatric brain cancer research

July 16, 2021

I know this is a bit of a read…but please, hang in there to the last word.

When my father passed away, he did not “lose” his battle with brain cancer. He fought, he advanced science, he helped others throughout his own struggle, he made the technicians, nurses and doctors laugh (that darn dark sense of sarcastic humor!) and he LOVED on his family. Once his mission here on earth was complete, I believe that he simply handed me the torch. And then, in true Rob/Dad/Gaga form, he steered my focus towards kids. Because as you all know, after our mother, we were the loves of his life. Only to be eclipsed by the absolute love for his grandchildren. 

With my mother’s blessing, I created the Robert J. Michalski Memorial Fund through Arms Wide Open Childhood Cancer Foundation. 100% of the donations will ALWAYS be directed to pediatric brain cancer research.  

For 2021, inspired by an incredible young man and a true pioneer, Jace Ward, I turned my focus to the Monje Research Lab in order to expand and optimize the DIPG/Spinal Tumor (H3K27m) CAR T-cell Trial at Stanford. I cannot explain what is happening there any other way – 𝙬𝙚 𝙖𝙧𝙚 𝙬𝙞𝙩𝙣𝙚𝙨𝙨𝙞𝙣𝙜 𝙖 𝙢𝙞𝙧𝙖𝙘𝙡𝙚! 

The brain tumor, Diffuse Intrinsic Pontine Glioma (DIPG), is terminal on diagnosis. About 300 children in the U.S. will get DIPG each year and most will not live beyond nine months. Nearly 60 years ago, Neal Armstrong’s daughter Buffy died from DIPG. There have not been any drugs or successful treatments since then.

The trial that is being conducted at Stanford today is the most promising therapy we have seen yet. In fact, it’s not only promising, it’s exciting! The medical and research teams, using an Ommaya Catheter, are infusing CAR T-cells (Chimeric Antigen Receptor T Cells) directly into the brain stem tumor.  The T-cells target the GD protein that is found in the DIPG tumors and kill the tumor cells. Jace, diagnosed with DIPG two years ago, was the first to use the catheter and had five infusions. With each infusion, he had improved functions. Each infusion varies in effects, because as the T-cells kill tumor cells, the process causes varying degrees of inflammation that has to be controlled. It has been a learning process with each infusion. If the inflammatory response could be better controlled, perhaps more CAR T-cells could be delivered to wipe out the tumor in a few doses.

These early trials are extremely expensive and therefore can only accommodate a very limited number of children. DIPG will not wait. We cannot wait, we WILL NOT WAIT!

To get an idea of the impact Stanford is having, PLEASE read what Jace’s mom, Lisa Ward, wrote back on June 2, 2021:

“Jace is finishing his 4th dose and will have a 5th dose with twice as many cells on June 15.  So far, the Car T Cell beats back the tumor each time and improves his symptoms as compared to the day he arrives.  Most of the tumor is NOT growing back.  The tumor is less dense in ALL areas than it was in early January.  The Car T Cells have reduced the size of his pons so that the CSF flow around the pons is clear and the ventricles are once again small. Jace had a Car T Cell infusion one week ago.  He is walking much better now.  From a couple steps to now two laps around the unit with more bend in his knee.  Jace is talking better from one word clarity to full paragraphs. He is using his hand more than when he arrived last week. This is not yet a cure. It is a treatment. What we know is every round, from every patient the team learns so much. Every round for Jace has been very different in the way his body reacts. It is a very hands-on treatment for the team. The experience for the patient is hard but extremely well supported. There are things we don't yet know - such as why if the tumor is decreasing and there appears no "off tumor" damage, do some symptoms continue to worsen.  What we do know is that when he does the Car T Cell, the walking, talking, headache etc. always improve. He has no brain fog as is common with chemo treatments. His immunity is not reduced. It may be that more Car T Cells are needed in one infusion. Additional components are needed to keep the Car T Cells circulating longer.  Each time he returns, more Car T Cells ARE found in his CSF and no circulating tumor DNA is found. 𝗧𝗛𝗜𝗦 𝗶𝘀 𝘄𝗵𝘆 𝗥𝗜𝗚𝗛𝗧 𝗡𝗢𝗪 𝘄𝗲 𝗺𝘂𝘀𝘁 𝗲𝘅𝗽𝗮𝗻𝗱 𝗮𝗻𝗱 𝗼𝗽𝘁𝗶𝗺𝗶𝘇𝗲 𝘁𝗵𝗲 𝘁𝗿𝗶𝗮𝗹 𝘁𝗼 𝗹𝗲𝗮𝗿𝗻 𝗺𝗼𝗿𝗲. 𝗗𝗜𝗣𝗚 𝗪𝗢𝗡'𝗧 𝗪𝗔𝗜𝗧.  𝗜 𝘄𝗼𝘂𝗹𝗱 𝗮𝗿𝗴𝘂𝗲 𝗮𝘁 𝘁𝗵𝗶𝘀 𝗺𝗼𝗺𝗲𝗻𝘁 𝘁𝗵𝗶𝘀 𝘁𝗿𝗶𝗮𝗹 𝗶𝘀 𝘁𝗵𝗲 𝗯𝗲𝘀𝘁 𝗮𝗻𝘀𝘄𝗲𝗿 𝘄𝗲 𝗵𝗮𝘃𝗲 𝘁𝗼 𝗗𝗜𝗣𝗚. We are in a race against the clock, but hopefully if we all pitch in, we can help extend quality of life for many kiddos this year.”

𝗢𝘃𝗲𝗿𝗮𝗹𝗹, 𝗝𝗮𝗰𝗲 𝗵𝗮𝗱 𝗮 𝟲𝟬% 𝗿𝗲𝗱𝘂𝗰𝘁𝗶𝗼𝗻 𝗶𝗻 𝘁𝘂𝗺𝗼𝗿 𝘀𝗶𝘇𝗲!!! This has NEVER happened with DIPG. Never.

But…for Jace Ryan Ward, the clock stopped on July 3 at 11:22 p.m. For a young man I never had the honor of meeting in person, I felt my heart shatter. I’m not really sure the shock has worn off yet. His family, friends, admiring little fans and so so many of us, are devastated. But we know he’s left us all with marching orders to GET BUSY!!!

And so, here I am.

From the bottom of my heart, thanks for making it to the last word.

Much love.

Kristen

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Robert J. Michalski passed away at age 58 after a more than 2.5 year battle with Glioblastoma Multiforme (GBM) – malignant brain cancer. GBM is considered a grade IV tumor. They are the most aggressive and are very infiltrative, spreading into other parts of the brain quickly. During that time, Rob was instrumental in one of the drug trials he participated in. He was committed to using his cancer battle to help others and further research. 

As told to us by our Board Chair, his daughter, Kristen Alexander, he LOVED kids. He had 3 beautiful grandkids he absolutely adored and would do anything for. She knows Rob would be honored by this fund. 100% of the funds raised will be used to fund pediatric brain cancer research. 

If you would like more information about this fund, or the trial, please feel free to contact Kristen at [email protected]

THANK YOU for your support!

With Faith, Love, and Much Hope for a Cure,

The Arms Wide Open Childhood Cancer Foundation Team