It has now been 4 months since Phoenix received her new bone
marrow…the new cells that will keep her cancer-free. The time has flown by and I can hardly
believe that here we are in the middle of
summer. Phoenix continues to heal and
thrive. Her central line removal surgery
was barely a hiccup for her. She never
needed more than a Tylenol for pain, and two days later she was playing with
friends. It is honestly amazing.
Clinically, she only has a few days left of her “transplant”
medicine (Gengraf), and has been weaned from it without any symptoms or signs
of graft vs. host complications. This is a real.big.deal. Another milestone reached. Unfortunately, and fortunately, the
transplant med will be replaced with the cancer med Tasigna. This med is actually a leukemia inhibitor (preventer)
for her specific subtype of PreB ALL (ph+).
I say unfortunately because we
hate taking medicine, but fortunately there are amazing pharmaceuticals available
that play a major role in remaining cancer-free.
I am sincerely grateful to all who continue to
keep our family in your prayers, and I thank you for always encouraging us with
your comments. We love sharing in your
faith, hope, and love. God Bless.
Clinically, she only has a few days left of her “transplant”
medicine (Gengraf), and has been weaned from it without any symptoms or signs
of graft vs. host complications. This is a real.big.deal. Another milestone reached. Unfortunately, and fortunately, the
transplant med will be replaced with the cancer med Tasigna. This med is actually a leukemia inhibitor (preventer)
for her specific subtype of PreB ALL (ph+).
I say unfortunately because we
hate taking medicine, but fortunately there are amazing pharmaceuticals available
that play a major role in remaining cancer-free.
Right now I am happy that our biggest issue is getting back
to regular life. Every family has a
normal…and we are trying to find ours. Phoenix is simply fantastic at moving
forward, and working hard, and setting new goals and dreams for herself. As the Mom, I am still trying to shake off
the fear and heartache that have covered me since the relapse, so that I can be
a real human that is useful to the world.
Some days I am so good at being a human!
Aaaaaaand some days are harder.
A few nights ago Phoenix awoke suddenly and said, Mommy?! I jumped right up with a Yes, honey, what is it?! Sleepily she replied, Nothing. I love
you. I slinked back down into my pillow
feeling so relieved…and then I cried. The
fear of what could have been wrong was enormous. My body is trained to respond to that
out-of-nowhere call, and my adrenaline was already pumping so that I could
react. And then the thankfulness that
everything is totally fine was overwhelming…the post-traumatic stress response is a hard thing
to work through.
Phoenix sleeps in a twin bed, next to our big bed,
in our room. After years of hospital
stays, with so many traumas, it is our attempt at having peaceful nights. It has been very successful for our
family…but sometimes I realize that it’s not regular for a 9 year old. It bothers me for a second…for her…and for
me…but then I remind myself that it will not always be this way…and for now
this is the best we know how to do. This will remain a part of our new normal.
This life-touched-by-cancer is always a work-in-progress…but
I suppose ALL life is, right? Right.
You are so very good at being a human!! You are one of my favorite humans. Love you so much. PS Gray is 9 and slept with me last night. He said being near me means he can't have bad dreams. You are such a good mom. I can't wait for your normal to feel more normal every day.
ReplyDeleteI read but need to comment...you are an amazing mom. So thrilled there are happier days for your family!
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