When Kate was just a baby, I would write letters to her each month. I would tell her all about the new things she’d learned, the fun things we did and how much she’d grown (and how much she was loved.) I did this for a year and then planned to write her a letter every year on her birthday.
It has been two months since Kate’s diagnosis and, while the occasion seems far less celebratory, two months of treatment in this journey is still something to acknowledge and reflect upon. In two months, Kate has experienced the following:
- 42 days of oral steroids
- 6 doses of vincristine (chemo)
- 4 doses of doxorubicin (chemo) and the drug, Zinecard, which is given with it to protect her heart
- 3 doses of methotrexate (chemo); one of which being a high-dose, 24 hour drip
- 1 dose of asparaginase (chemo)
- 1 dose of oncaspar (chemo)
- 6 spinal taps; each with three different types of intrathecal chemo
- 3 bone marrow biopsies
- 15 days of 6mp (an oral chemo pill)
- 1 visit to the ER
- 22 days in the hospital (8 for her initial diagnosis; 9 for terrible mouth sores and 5 for a scheduled high dose of methotrexate)
I don’t want this blog to become so depressing that no one wants to read it but it’s hard to find things to write about that involve cancer that AREN’T depressing. Because of that, for every monthly recap I write, I’ll find a way to add a positive spin.
We have been very fortunate that so far, Kate is doing well and is mostly her happy and silly self. Her side-effects are usually from the vincristine and are mostly aches & pains. She has some mild neuropathy in her feet from it that make her walk a little funny and her eyelids droop which is also a nerve-related issue. She gets a little tired a few days after a big round of chemo but is still eating well and is doing great with sleep. Even (so far) on the steroids, while we do see some of the dramatic behavior and compulsive eating, it usually doesn’t last too long. We’ve been tremendously fortunate that so far, the chemo from her study with the Dana Farber Cancer Institute (oncaspar) has NOT caused the allergic reaction its’ so known for. That could change, but we’re thankful for every step we take in the right direction. She lost her hair about three weeks into treatment, but she doesn’t care at all. She pats her head and says “Uh oh! I don’t have any more hair! It grow back, mommy” while nodding.
I am so proud of what strength our little girl has shown. She has learned to be SO brave. Sure, she still freaks out over being accessed & de-accessed (wouldn’t you??) and she still cannot stand the smell of alcohol swabs. She can taste the saline flush they use in her port through her mouth & nose and really hates that. But all in all, she is one tough cookie. She’s far tougher than her momma and about a billion times as brave. Thank God she got her strength from her daddy.
These two months have felt at least twice as long, but when I look back and see how far we’ve all come from that day, my heart swells. We tell her all the time that being brave means being scared to do something…but doing it anyway. She is my hero and I love her so much.