You Can Bank On That!
By LesLee Hacker
I had stopped writing for a while because I had lost my voice. I realized I didn’t have anything to say because I was so confused about how to move forward. I had to take some time to be quiet and learn the ropes from some others. My hope in writing again is to share some things I have learned from those so much wiser than myself. I am still trying to find some balance, but we will get there one day at a time.
This week we are in Seattle. Lolo is doing an internship with Dr. Soheil Meshinchi and his lab team.
What an incredible experience!
I am so proud of her, but not for the reasons you might think. I am proud of her for moving past her fears and doing something she is completely uncomfortable doing.
The first couple days in the lab were rough for her. The work is tough and very hard to understand. I had to talk her off the ledge the second morning of her internship and explain what she was learning was hard for people that have degrees in the subject. We were at a stand off at the cute bakery we had found. She wasn’t going to go in for the day!
It is always funny when we push our little birds out of the nest. It is scary! Are we doing the right thing? I just knew how much she wanted to do the internship. I finally stopped pushing back and realized she was just afraid. I talked her through it some and reassured her that she was right it was intimidating, but so what? No one had the expectations from her that she did. I told her she had to go and make the best of it.
Did I do the right thing? The proof is always in the pudding. It probably could have gone either way. But, luckily, Lolo came back from her day beaming. She settled in. She was surrounded by other interns that had aced their AP tests and are applying for school at Berkeley and other prestigious schools. Lolo doesn’t have confidence in her academic abilities. She has missed so much school when surviving had been her goal, not getting into a prestigious school.
I urged her to simply humble herself, ask questions, and be willing to be open to the experience. She really wanted to go when we were back in Omaha, but working on a research bench at the most prestigious cancer research center in the US might be a little intimidating.
I get it. So did she.
At the end of the day, she came home with information about her fellow interns and the many scientists she encountered. She did mess up her PCR (polymerase chain reaction) test, but she was relieved to know that most people did until they improved their technique. She was also told she could keep trying the procedure until she got it. She was proud of her detailed note taking in her lab notebook. In addition, she found some very cool spaces at the Hutch, including a roof top lunch space that looks over the city of Seattle and Lake Union. The next few days, she has trotted off with her official “Fred Hutch” badge and her lab notebook ready to try again.
During these couple of weeks, I have also learned a lot. I have learned too much to share in one post, so we will start with banking!
The Children’s Oncology Group’s Project Every Child should allow for all cancer cells to be banked. A couple of things are preventing that from happening. This will slow down research and can actually hurt each child’s chance, if they should relapse.
What is banking?
You can bank on that!
Banking means that instead of throwing away samples from the cancer site, the cells or tissue is “banked” or stored. Each hospital has a different policy on doing this and different types of cancer vary also. I will share how pediatric AML can be affected in this way. For pediatric AML, the original bone marrow aspirate and biopsy should be banked for every child. Sometimes more tests need to be run and it is good to have more cells available for testing. Every parent should ask their own doctor and hospital staff to insure that their child’s cells are being “banked.” In addition, at some point, these cells may be needed for research.
For some reason, families may deny the use of their child’s cells for research. Some families don’t trust what is being done with those cells. It is so important that these cells be seen as sources of information to save other children’s lives and maybe even their own. I would be glad to talk to any family about questions they may have about this. But, think about it….if your child’s cancer can be used to help develop effective drugs or potentially lead to a cure so that other children don’t have to suffer, wouldn’t this be wonderful?
In addition, should your child relapse, it is important to compare the cells of the 1st cancer to the new cancer to look for mutations from the first incidence of cancer to the next.
Also important to understand is that research changes all the time. Six years ago when Lolo was being treated, no one was doing genomic sequencing on AML patients. Now, not only are they doing DNA sequencing, they are doing deep RNA sequencing and finding predictive patterns of a child’s risk for survival. If samples are banked, as technology changes, doctors may be able to pinpoint precise medicine to your child’s specific disease, should they relapse or have additional health issues in the future.
In summary, this week I learned that many parents are not having the tissue from their child’s cancer saved or “banked.” I didn’t know that and I didn’t know it was issue for research. I hope to advocate for parents to communicate to their doctors this desire to help research and their child’s survivability by having heir child’s sample “banked.” This includes tissue taken from chloromas for pediatric AML kids! So much needs to be understood about chloromas and their connection to some of the most aggressive extramedullary AMLs. Please, have some of the tissue taken from your child’s chloroma (if the chloromas is biopsies and in a part of the body that can be biopsied).