Showing posts with label 46 Mommas. Show all posts
Showing posts with label 46 Mommas. Show all posts

Thursday, July 6, 2017

A visit with the Alan's Hero Fund St. Baldrick's Scholar

Four years ago, we established a Hero Fund with the St. Baldrick's Foundation in Alan's memory to raise money for sarcoma research. Last July we were thrilled to share that the fundraising we had done through Alan's Sarcoma Research Fund had given us the opportunity to name a grant. Dr. Nino Rainusso of Baylor College of Medicine at Texas Children's Hospital would be named the Alan’s Sarcoma Research Fund St. Baldrick’s Scholar for his work in identifying and examining the most difficult to treat cancer cells from patients at TCH.

Today, we had the opportunity to meet Dr. Rainusso and have a tour of his lab. The first stop was the outpatient clinic at TCH, where Dr. Rainusso takes care of the some of the patients who have contributed tumor samples to his study. When we got off the elevator, we saw one of the cows decorated in a star motif, which seemed like a sign to us as we were here to see the work being done in memory of our supernova. More on that topic later. As he showed us through the clinic it was obvious how passionate he was about the work. Because they are from his patients, the tumor samples are not anonymous cells to him, but represent real people and real connections.

Then it was on to Dr. Rainusso's lab at the Faris D. Virani Ewing Sarcoma Center, where he works with other sarcoma researchers. We were very impressed by the collaborative spirit there. One of the rooms he showed us housed the incubator which grows the cells that he has identified and separated for further study. We got to see some of the equipment used to analyze the genes of the tumor cells, and where he would harvest samples of tumors for further investigation. He was very patient in explaining his work in lay terms and we were very impressed by the open nature of his sense of inquiry and all the possibilities that could come from his work.

We had brought Hilly, bought in Washington DC to symbolize Alan's lost opportunities, with us since funding this work was our way of making a mark in his name. If you look at what Harold wrote in the program for Alan's memorial, he referred to Alan as our supernova:
Alan's spirit was 'supernova bright'. A supernova is a very large star (which typically shines brighter with a much shorter life span) that comes to the end of its life cycle and explodes with an intensity that can exceed an entire galaxy of stars. And that explosion of light forms the building blocks for new stars and new planetary systems. The word 'nova' itself is Latin for 'new'. 
This work is Alan's explosion - new knowledge and new understanding, building blocks towards better treatments and eventually a cure. The work we are helping to fund is in place of all of Alan's lost opportunities, for all the things he might have done.

With what would have been his 10th birthday coming up this fall, please help us fund more work like Dr. Rainusso's! Judy will be shaving her head with the 46 Mommas this month in honor of all the might-have-beens and is aiming to raising $10,000 - $1000 for each year that Alan should be celebrating.

https://www.stbaldricks.org/participants/10for10

Hilly
Starlight cow ride for our Supernova Panda

Dr. Rainusso, Hilly, and Kevin at his lab
Bringing out a sample from the incubator. Once he identifies the target cells he separates them
and reproduces them in this incubator for further study.

Can you spot the cancer cells?
Dr. Rainusso works to identify, separate, and examine the most difficult to treat sarcoma cells
A sterile hood with negative pressure to keep the cells from being contaminated
Like us, Faris's parents wanted to fund pediatric cancer research
Thank you for the tour and your dedication Dr. Rainusso!



































Wednesday, July 17, 2013

Six months

Today marks six months since we lost Alan. It's been only a moment and it's been a lifetime. We will spend time together as a family today, in a park that Alan had enjoyed. Last week, Judy went with Lisa and Stephanie to take some of the books and toys donated by the 46 Mommas to our hospital, Methodist Children's. This was our first time back in the hospital since we came for the Beads of Courage Beads in Space tour last September, and due to the renovation, the first time back on the Ped/Onc floor since Alan went to MD Anderson last spring. It was startling to see things look so different and yet the same.

Seeing the staff that had known and taken care of Alan was bittersweet, but it was touching to see how many had remembered us, especially since it had been so long since Alan had been inpatient there.

This weekend, we wrote Alan's name in the sand. We were sad that we couldn't take him to the beach one more time but realistically, we know it would have difficult for him to be at the beach and not to be able to plunge right into the water. Seeing the waves come in and slowly wash his name away was hard feeling to process.








==============
[Thank you Russ and Denise for this wonderful slideshow of Alan's life]