Phoenix
is my 11-year-old daughter who was originally diagnosed with PreB PH+ A.L.L. in
October 2011, which returned in October 2014, and again in November 2016. She
is currently at CHOP awaiting CART therapy.
Five and a half years ago I would have given anything to see
the future. When Phoenix was first diagnosed with PreB, Philadelphia positive,
acute lymphoblastic leukemia, her brain was bleeding in more places than could
be counted. She was in a coma and on
life support. The ICU team was scared for her. The neurology team said they had
never seen a kid that “sick” and still be alive. The oncology team was skeptical but still
willing to try. The odds were not in her favor. If she made it through the brain trauma would she still be comatose? If
she somehow woke up would her cancer respond to treatment? I could have
never guessed that 5 ½ years later she would be a completely regular 11-year-old going to 4th grade. I
also could have NEVER guessed that she would STILL be battling cancer.
Dr. Grupp is one of the CAR-T cell therapy doctors at the
Children’s Hospital of Philadelphia. You can read about his ridiculously
amazing research and expertise at http://www.chop.edu/doctors/grupp-stephan-a. We (John, Phoenix, and I) met with him the
other day after he reviewed Phoenix’s 5 year cancer history, her most current
PET CT scan, and current MRI of her brain. Dr. Grupp told us that after seeing
Phoenix’s MRI, he was shocked to see a physically and cognitively functioning
kiddo. Sometimes we forget for a minute
that she is a true miracle. It is good to be reminded of that occasionally.
However, he warned, the scars on her
brain make her CART side effects unknown. He told us that 2 years ago he would
not have allowed her into the trial. The doctor told us that she may be the 130th
child to receive this therapy, but she is the ONLY child going in with this
kind of history. It could amount to zero issues or effects… or it could mean
some. He reminded us that this is experimental therapy and there is no
precedent.
These kinds of conversations are the reason why I could not
be “excited” to come to Philadelphia for this treatment. A lot of people
wondered if we were “excited to go to CHOP”. No. I am concerned, worried,
scared, and angry that it has come to this.
HOWEVER, I
am extremely thankful that Phoenix
has been accepted into this trial, and things are moving forward toward her
newly re-programmed T cell infusion on Tuesday, April 18th. On the positive side of rare, Phoenix is going
into this treatment with no evidence of disease, which decreases the likelihood
of some of the more common side effects of this therapy. I am optimistic that this treatment is the
latest and greatest, and I believe it shows an amazing possibility for a life
without cancer.
I wish I could see the future right now. I want to look ahead
at 6 weeks from now…6 months…6 years.
But…That is not how life is meant to be lived. So, I will continue to do
this mom gig one day at a time, one foot in front of the other, and have faith that everything will happen
exactly as it was meant to.
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