Jan. 25, 2016, 3:12 a.m.
I never, ever have very much time, but somehow it seems important to write a post right now, before the next blow hits. Per my last post, Delayed Intensification was delayed, for 13 days to be precise. Aila's neutrophil counts climbed to a very low minimum last Thursday, and she was cleared to begin Part 2 of DI. We felt defeated and demoralized last week when she was held back. But I have to say that we felt a similar defeat and demoralization when she was cleared this week. Nothing right now feels right or good.
Tomorrow, seven days before her third birthday, Brian will drive Aila to UCSF first thing in the morning. They will access her port, and she will receive infusions of two drugs, one old and one new. The new is cyclophosphamide. Cyclophosphamide is, per Wikipedia (the world's source of all information), a "nitrogen mustard and cytotoxic chemotherapy agent similar to mustard gas. Although its common use is medicinal, in principle it could be deployed as a chemical warfare agent. Nitrogen mustards are nonspecific DNA alkylating agents. Nitrogen mustard gas was stockpiled by several nations during the Second World War, but it was never used in combat. As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples are therefore classified as Schedule 1 substances within the Chemical Weapons Convention."
Of course, they'll give her an age- and weight-appropriate dose. No blisters will appear, I'm sure! (Sorry, not funny.) To be completely honest, I vomit a tiny bit in my mouth every time I think about this "drug" (actually, any of them) making its way into my daughter's DNA.
So tomorrow begins 4-6 weeks of the next chapter of the leukemia horror show, it seems. She will be infused with not only cyclophosphamide, but also cytarabine, another drug that tricks her DNA into killing itself. Brian and Aila will watch the Lego movie 2-3 times before moving on (if Brian's lucky) to Frozen. Everything is awesome! Let it go, let it go! Later that night, when she's home, she'll have her first of 14 doses of oral thioguanine, another fantastic drug that has among its very real risk factors something called veno-occlusive disease where veins in the liver are obstructed and renal failure induced. I wish that I could say that I was exaggerating the potential side effects, but I'm really not. The crazy thing too is that we really aren't given informed consent, where we are able to weigh the risks and the benefits of these drugs. And, perhaps even crazier, I'm kind of glad that we aren't. Really, what mother or father would consent in their right minds to drugs that resemble mustard gas and could (of course! of course!) impair her ability to have babies later in life, should she choose?
After tomorrow, she has infusions of cytarabine at UCSF on Tuesday, Wednesday, and Thursday of this week. Then Monday, Tuesday, Wednesday, and Thursday of next week. 8 infusions in 11 days. God (Elsa?) help us.
We're not exactly losing our minds, in the classic sense (would I even know?), but we're very beaten down. I can honestly say that I no longer know what parts of what I do every day even matter...or more likely, I'm beginning to understand exactly what matters? When Declan was born 9 months before Zander was even four years old, we knew it was going to be hard with three tiny people in our tiny home. But we were prepared and ready for the backbreaking labor of the "happy" hard. No one prepares for the relentlessness of the "sick" hard. Oh, and Brian clipped the tiny amount of hair that remained on her head today. It was mostly gone, and what was left was tangling itself into a rat's nest as soon as it dried after each and every bath. She is now beautiful and bald.
Sweet dreams, Aila Muriel, for the next four hours until we awaken you to drag you to your first of eight infusions. Sweet dreams, Brian Christopher, the man I'm so lucky to have met and grateful to have married. I'm so sorry for all of our pain. May we continue to dream of Zander's first breakup, Aila's first tattoo, and Declan's eventual and inevitable brush with goth subculture.
We love all three of you with all we have, remember that, okay?
Mom
Comments
Chris Cosgrove 8 years, 10 months ago
Can't tell you our feelings.....It is an extraordinary incredible horrific situation,. I pray that your blessed beautiful baby girl continues to struggle and fight for all she's worth. She must have Cosgroverstreet 'fight' in her genes.
Link | ReplyBlessings, love and hugs.
Chris
Sherrie 8 years, 10 months ago
My dearest Vic,
Link | ReplySometimes I feel helpless and guilty as I read your blog posts because I want to be able to do more for you and your family (but don't know what to do), and I feel that I've somehow abandoned you in pursuit of my dreams (yet I know that this is what you'd want for me since you were the one who pushed me to do in the first place). But honestly, it isn't about me. It's about how you're such a beautiful soul to be able to still see hope and kindness in a universe that has seriously done its best to break your spirit. It's about how you are always so hesitant to ask for other people's help yet are always the first to offer it to those in need. No one deserves what you and your family is going through, obviously. But in my admittedly biased opinion, you karmically deserve it even less.
Here are my dreams. I dream for the day that you and Brian's biggest concerns are how to give the dreaded "sex talk" to Zander (use protection!), looking up how much it will cost to get Aila's lower back tattoo removed (though I hope she'd choose a better spot), and where all your black eyeliner has gone to (and why your son is so much better at it than you are). Also, I love you.
Always thinking of you,
Sherrie
Rosie 8 years, 10 months ago
Victoria - I continue to think of you and Aila and your family almost daily. I know there is nothing to say to make the situation any better. It's just shitty. And it's heartbreaking to think you just have to endure and continue, holding on to the promise and hope that this too shall pass and Aila will one day be well again. Recently I started reading Paul Kalinithi's book and his motto to get him through the days I think is so apt, "I can't go on, I must go on". And so with that, I am sending all the support, care, empathy, understanding, grace, tenacity and grit it takes to keep going. xoxo.
Link | ReplyAndri Bjornsson 8 years, 10 months ago
Vicky and Brian,
Link | ReplyI have no words, and cannot even imagine the horror you are going through. I wish I could give you a hug. We´ll be hoping for the best, and we´ll continue to admire your courage.
Much love from me and Kata,
Andri
Kim Fry 8 years, 10 months ago
There are no words....really....which is why I have been so silent. I look at her beautiful face in the picture of her 'bald' and all I see is you. Amazing. Those blue eyes filled with what seems to be the look of stubborn determination and wicked intelligence. Much like her mama, I suppose. No words. Only an enormous outpouring of love from my heart in CT.
Link | ReplyKim Fry 8 years, 10 months ago
Dearest Vic,
Link | ReplyThere are no words...which is why I have been so silent for all of this time...no words for the complete horror that cancer is. And I honestly can't even begin to imagine the true horror of childhood cancer. What I ca say, though, is that when I look at your beautiful daughter and those crystal blue eyes, I see what seems to be amazing resilience, a strong-willed spirit, and wicked intelligence. Much like her mama. I have no words. Just tremendous amounts of love coming from my heart in CT.
Kim
Jed 8 years, 10 months ago
Love and Light from Colorado.
Link | ReplyAngela Tana 8 years, 10 months ago
Vicky first I want to tell you how many times I've written something in your blog and somehow I pressed a wrong button and it didn't go through. I am not tech savvy!
Link | ReplyPlease know that I'm checking in on you regularly and you are in my thoughts daily. I wish there was an alternative and less disastrous proven treatment for your daughter but there isn't. Remind yourself of this when your daughter goes into treatment and know that you are doing exactly what you need to do. XOXO. Your daughter is tuff stuff! I want to smother her in hugs and kisses! She's beautiful.
Heather 8 years, 9 months ago
Vic,
Link | ReplyThere is nothing to say but that we are sending our love. Your loving nature and resilient spirit shine through as you share this horrific experience. We are reading (listening).
Love from our family to yours.
Heather
Janice Bellaire 8 years, 5 months ago
I'm thinking of and praying for all of you. Please update us if you have time and strength. Please say hi to your dad for me.
Link | ReplyLove and prayers!
Janice Bellaire 8 years, 5 months ago
Thinking of and praying for Aila and your family. Would love to have an update when you have time and energy.
Link | ReplyNew Comment