Under the cloak of night

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It’s about 9:20 on Sunday night.  I’m upstairs in the 5th floor Family Resource Lounge.  I know it’s been 2 days since I’ve written and I want to give you an update.  With a full belly from left over Mod pizza and one seriously tasty taco prepared by Lindsay (thanks Lindsay), I get myself set up with my iPod playing my newest fave band: Ola Podrida.  I can’t stop listening to them.  I know I should get out the computer but an old People magazine from September lures me in with the announcement that Ryan Gosling is dating Eva Mendes.  Somehow writing about drugs doesn’t seem too appealing – not nearly as appealing as hotty totty Ryan.

But I’ve been telling you over and over I’d let you know about chemo, so here it is.  Chemo, at least at this point, is utterly anticlimactic.  As the world winds down and Allistaire gets all cranky from fatigue, we get her all cute and nudy and wipe her down with special wipes that leave an antibacterial coating on her body to protect against infection.  Then on go the footy jammies that Allistaire has always referred to as “jammie shooooes.”  We leave the very top unzipped so the tips of her two lines pop out the top like jumper cables waiting to be activated.  Finally on goes the sleep sack Allistaire cuddles with throughout the day like Linus.  We try to convince her that yet another sippy cup of milk or juice is in her best interest, turn off the lights and blow a kiss goodnight.  At 9:30 pm a (hopefully) stealthy nurse quietly enters the darkness of her room and attaches her lines to the IV machine.  First to go in is a dose of ondansetron to combat nausea.  Then at 10 pm she returns with the first chemo for the night – cytarabine.  This only takes 15 minutes to enter in and infiltrate her body.  At 10:15 pm she is given etoposide over the course of an hour.  During this hour, Allistaire is being checked frequently as it can sometimes cause a drop in blood pressure.  At 11:15 pm she is given daunorubicin for 15 minutes.  She gets one more dose of cytarabine at 10 am the next morning.  On the second day of chemo, she had the same regiment minus the danorubicin which she essentially get’s every other day for the first five days.  The last five days she is only getting ondansetron for nausea and cytarabine twice.  She will get chemotherapy for 10 days for this first round.

It is hard to grasp that such warfare can be conducted in virtual silence, in darkness, so simple and without fanfare.  Tonight will be her fourth night out of ten.  So far she seems to being doing well.  The doctors have said over and over that such small ones do remarkably well, probably because they start with healthy bodies overall and can’t anticipate or dwell on what may come.  It sounds like we can expect to start seeing the impact of the chemo within a few weeks.  Because the chemo kills fast growing cells – any and all fast growing cells, she will likely loose her lovely angelic blonde wisps and develop mouth sores once the thin coating of cells in her mouth and throat are destroyed.  All of her blood levels will start falling as well.  As I understand it her levels will get near zero.  She will be supported with transfusions of red blood cells and platelets during this time.  At some mysterious tipping point her counts will slowly start to rise.  Once her ANC (Absolute Neutrophil Count) gets above 200 we can go home for a week.  When her ANC reaches 750 it will  be time for round 2 of chemo and we’ll return to the hospital.

The goal of this first round of chemo, referred to as “induction,” is to put Allistaire’s body into remission which is defined as 5% or less blasts/cancer cells.  Of course they want that percentage to be as low as possible and ideally 0% which they would refer to as “deep remission.”  At the completion of induction they will do another bone marrow draw to determine how well her body responded to chemotherapy.  If Allistaire is not in remission at the end of induction we are told she will definitely be needing a bone marrow transplant.  A transplant could take place after the second or third round of chemo.  The goal of the doctors in that case would be to get Allistaire into as deep of a remission as possible prior to a transplant.

There is a lot of unknown about the days ahead.  Some folks have asked me how I’m holding up, how I’m handling this.  When Allistaire was born I determined to take each day for what it was.  I intentionally rejoiced in exactly who Allistaire was when she was five days old, when she was two weeks old, 7 weeks, etc.  I purposed to not let my mind wander to what it would be like when she could smile, when she would stop crying so much, when she could sleep through the night, when she could roll over, when she could sit.  I wanted to sit with her and soak all of her little five day old wonder up and enjoy her for who she was that day.  I am a person who is constantly thinking of the future. In a flash of a moment I can plan out the next 20 steps.  Once Solveig got a particularly freakish rash and within minutes I was fretting over what state we would bury her in.  I look forward with anticipation to the good things too – the next holiday, the next trip to Bozeman, the next season.  I struggle mightily with being fixed in the present.  I have Allistaire today.  I will choose to soak her in today.  Today our nurses are Shelly, Danny and Brianna.  Ut is the sweet woman who empties the trash and linens bin.  Jennifer and Ramona are the two Unit Coordinators at the front desk today.  Andy brings the meal trays and snack cart.  This is the life God has given me this day.  The sun rises and the sun sets.  God knows we are finite and need boundaries to care for us.  He has given me one day at a time.  For now He has seen fit to confine me to this place.  I look with expectancy for what the Lord has for me this day.

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8 responses »

  1. I showed my daughter, Emery, these pictures of your lil sweet Allistaire. She said, “She’s not sick anymore!” to which I replied, “Yes, sweet girl, she is. We get to continue to pray for her.” Then, Emery said, “I like Allistaire, she’s so sweeeeet.”
    We are praying for your sweet girl and your family. Hugs to you today.

  2. Jai! At some point, in EVERY post, I laugh AND I tear up. Seriously, I am SO thankful for not just your writing skills, but for your sensitivity skills in life. Your ability to observe at so many levels & to be able to articulate those observations/thoughts is rare (at least, in my opinion).
    From today’s writing, I’m mostly thankful for your humble stance on receiving each little thing, for today, from God (the shift nurses, the trash lady, etc). Your efforts to fight for peace with God BECAUSE of who God is, is challenging …and invigorating (insert a stoic Braveheart scene here… maybe the one where he’s yelling ‘Freedom’?)!
    🙂
    I’m right there with you!!!
    Press on in each moment of today & today only.
    🙂
    Love & butterflies (that’s cuz I know you love them, not cuz I’m mocking them…like I might normally 🙂 )

    • Yesturday we went to Teddy Bear room at the Hotel in Seattle. As I watched Alison my 15 month old and Conner 5 years play with the bears and laugh my mind thinks about your family. I know God is watching you and will give you what you can handle. As a mom we kiss boo boo’s to make them better God will kiss this one and make it better. God is sometimes the bigger Boo Boo kisser and we have to trust him. Your family is in my thoughts each day. I hope that you are able to just breath when you need too. I want to do something for your family besides words and prayes what can I do?

  3. Jai,You know how technologically challenged I am and so this is the first time I’ve thought to leave a comment. But I want to thank you for taking the time to write the blog-yes,we understand your need to take a break from cancer thougts, but I find such inspiration from what the Lord has shown you-such wisdom from one still so young! You are an incredible blessing to me! Although no one understands why the Lord has allowed this to come upon you and our family,it is obvious to me that He must be so proud of your response-You amaze me! How I love you, dear daughter of mine!

  4. Jai…as a young single girl who has a hard time not obsessing over her last breakup, or how many things on my to-do list DID NOT get finished, your blog is sooo amazing to me. You always have been and always will be one of the strongest women I know—strong in what she believes and in the character of her God! This is something I want to imitate…I’m watching you, sister & praying for you…hard. Praying that I can handle trials, however pathetically minute they might be, with as much grace as you handle what God has given YOU today.

    Love & prayers, sister!!

    • Jessica I very much appreciate your prayers on our behalf and on my behalf. I am humbled by the thought that anyone would want to imitate me. I am thankful though for the truth that God has been faithful to sustain me thus far. I know He goes before us and guards us from behind. Thank you for asking God to give me grace for even the little trials – I need that! May the Lord bless your desires to grow in Him!

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