Quality v. Quantity of life. Do you find yourself weighing this decision with your child? If they battle DIPG you do- constantly. Every decision is colored by this constant battle of more time with them verses their possible ability to enjoy their time together. I find myself wondering about this even more lately, as we approach the one-year mark of Mary’s passing on to heaven.  Did we do enough to give her quality? Could we have done more to give her quantity? I have no true answer to either question; I just pray she had a good life for the time she was here.

Weighing these decisions, I have come to realize there is no right or wrong and what works for one fighter and their family might not work for another and that is ok.  This is your battle, and every child seems to respond differently to trials so there is no right path- if there was, we would have a standard of care!

For us doing a car-t trial at Stanford wasn’t easy but it also gave Mary quality and quantity, for us at least.  Mary was on that trial February 2021- July 2023.  Two years in Palo Alto- it became home. Even though the trial meant a fair bit of time, inpatient Mary loved it- doctors, nurses and therapists became family and let’s be honest she was running that hospital sometimes (one day I will share her antics and what we found to be fun in the hospital).  Looking back when we were outpatient, the kids got more experiences and attention then they likely would have at home. Not that we aren’t present parents but being far from home there weren’t the distractions that take you away- no housework, no friends or family obligations, we worked but weren’t going into an office. We had time to just be with the kids and we made the most of our time out there, even though it was stressful.

Honestly, we spent Mary’s whole fight trying to fit a lifetime of experiences into what time we had.  Financially this was hard, and our credit cards can attest to that but we know she loved the time she had and are so thankful to the foundations we met who helped us give her quantity and quality of life.

When your child passes there is this instant change to life in almost every aspect and as hard as that is for us parents it might be harder for siblings, especially younger ones as they don’t remember a life without their sibling. Robbie is begging to go back to Palo Alto because all he remembers of life is going back and forth to California- he grew up half his memory life there and its where he feels close to Mary. This is my reminder to keep her memory alive for both boys now and if that means lots of Palo Alto trips, we will make it work.

What advice I can share is talk as a family and let your child (if old enough) have some say in how they want to live their life. What you focus on most is up to you and not anyone elses, but doctors, nurses, therapists and other parents who have been through it are a great source to get the most info you can to make a decision you will feel most comfortable with. Parents or older children that are actively on a trial or have done one in the past (we were so fortunate to have Jace Ward to talk to about the trial) are a great source to tap to find out about the patient and family experience and what life is like on trial.  Make sure to try to talk to a couple if at all possible- everyone has a different view on it.  Don’t worry- no one is ever 100% at peace with these decisions so nothing is wrong with you if you look back and worry about your decisions. None of us have the magic formula for this fight and we all do the best we can and our children know that.

Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.