8 Days of Round 2 Chemo Done

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Today Allistaire had her last doses of chemo for this second round, called Induction 2.  Just like last time, she has done incredibly well.  She has not thrown up and continues to have a ridiculous amount of energy.  While she is sleeping a bit longer at night and taking 3-4 hour naps each afternoon, she continues to go buck wild crazy on the bikes.  She has made a lot of progress in her coordination on the bikes and now knows all the little tricks.  Just yesterday she learned how to push off with great force on the scooter and then put her feet up on the front and glide along the slick floors.  Today she has added screaming while driving to her repertoire.  She whips around the corners and today in an especially vigorous gliding session, she nearly rammed the Transplant Team with the scooter, while screaming at the top of her lungs, as they were doing rounds.  They are an especially serious group which only amplified the hilarity of Allistaire.  Now that Piper is gone (she got to leave on Tuesday), Allistaire cruises with her newest friends Allison and Stellablue.  For some of you the name Stellablue will be familiar.  She and her family are from Bozeman and we had the delight to meet them and take some laps around the Unit with them.  They’ve been our next door neighbors since we returned last week.  Can I just say that it is such a joy to have a little Bozeman come our way!

There are ways though that show us the chemo is having an effect.  Though Allistaire remains undaunted so far in her enthusiasm for the bikes, she has developed quite a fussy, grumpy-pants attitude the last day or so.  She has taken to stomping her feet and hitting her arms against her chest in demonstration of her angst.  We are working with her to articulate her wants and needs with words rather than in grunts and whines.  Her vocabulary has grown so much.  She continues to put two words together and occasionally three.  In the last week she has begun repeating nearly anything you say.  She has learned a few of the nurses’ names which melts their hearts.  It does not seem that the chemo has stunted her development.  She loves so many of the medical practices that she has become familiar with.  She loves to “wipe, wipe,” the end of one of her lines with an alcohol wipe while the nurse cleans the other line in preparation for flushing it.  Anytime a doctor walks in with a stethoscope she wants to listen too.  She is especially amusing in her joy for shining the light in her mouth.  She won’t budge open her mouth for the doctor to shine the light in but is happy to do it for them.  This is quite handy as they are regularly checking for mouth sores which are a common by-product of chemo.  We are working hard to keep her eating.  Every day it is a challenge to figure out what array of food to put in front of her in hopes that she will eat it.  So far she is maintaining her weight which we are thankful for as we would really like to continue to avoid the feeding tube.  Today, in fact, she had her first Frappaccino.  I had yet another headache and thought that given that it was a gorgeous 60 degree day, I would get some caffeine into my body with my first Frappaccino.  Allistaire loved it and had a great time drinking out of the straw.  Lastly, Allistaire’s counts have begun to drop as they should as a result of the chemo.  The day before she began chemo her ANC (Absolute Neurtrophil Count), was 1386 and is now 858.  Her hematocrit (red blood cell counts) dropped from 33.3 to 24.6, which means she’ll probably be needing a blood transfusion in the next few days.  Her platelets have dropped from 395 to 63.

From this point forward everything is really just a waiting game.  First we wait for her ANC to drop to zero which should occur sometime in the next several days.  Once it drops to zero it will probably stay there for 1-2 weeks.  When it begins to rise it takes 1-2 weeks on average for it to get up to 200.  Two-hundred is the level it has to be for us to leave the hospital again.  So from here we’re looking at about 4 weeks until we can go home.  Please pray that Allistaire will be free of fever and infection so that she will be as healthy as possible during this time that she is so vulnerable as her immune system is suppressed.  Pray too that she will keep eating enough to maintain her weight.  I too would love your prayers.  I have been struggling with nearly daily headaches which really makes it a lot harder to be here.  I’ve been trying to get more sleep (which is part why there have been fewer posts – sorry) but even on nights that there are relatively few interruptions, I have a lot of discomfort while sleeping and end up with muscle pain which then turn into headaches.

As before, I’m having some issues with getting some longer videos to post properly.  I’m going to get my techno husband on the task as he’s far better at this sort of thing than I am .  The following photos are of Allistaire sporting her “Angry Birds” hat that someone made.  A whole bag of them showed up the other day and the very cutest one was left for last and so it became Allistaire’s.

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5 responses »

  1. Jai and Sten…..
    How do you say ‘adorable’ in every language for sweet Allistair…and the Love of God that wraps himself around your precious words as you so eloquently express this life you have been given with amazing grace… to conquer what only a few people are able to conquer.
    After reading your last post I must say friend…that my heart was left speechless. I sat at my computer trying to respond…but found myself without words simply because you said them all like honey poured out. It was as if the oil on your sweet heart was warm with emotion and with it came the ink to pour on paper.
    The names on paper at the chapel in the black book…a silent voice of love, life, and pure gifts of a few to many days of the children we are so gifted by, but seemingly cut short the time with those who love them so dearly. Lives cherished for sure as we truly never know the plans God has but trust it is He that is the giver of all gifts. The names on the pages were a reminder to me of a visit I once had at the Colosseum in Rome in which scattered about are visible crosses etched into the stone walls. Signs of people who knew their God to be a God of love and also God of Sovereignty in which we truly may never know but one thing is for certain…we can trust Him. The crosses a reminder of the life given and grace poured out and pure love for His children.
    I have copied a link to a song I want to share with you and although I am not techno savvy either, I pray you are able to click and play. However, if not…can I recommend you go to Youtube and search for ‘Passion 2012 – How Great Is Our God World Edition’ It is a song in many languages about the greatness of our God!
    Praise the Lord for miracles and God Bless you sister.
    much love,
    Terry

  2. Jai, We are so happy to hear that Allistaire is doing so well. We will continue to pray for her and your family until she can go home from the hospital for good. I read every day of your plight and am really amazed at how well you are handling this siutation and placing your faith in God. He is the only one who can help you. Tell your parents I said Hi and ask them to send me there email address. I found pictures of you and Patrick when you were kids the other day. Its nice remembering times when you were children and carefree to play.

  3. So glad to hear she is still doing so well! We’ve been praying she’ll be fever and infection free, and will continue to. I’ll also really be praying for your headaches. Those can be so debilitating. I really pray you’ll be able to find relief. Praying for your family:)

    On a side note, still chewing on your last post. Thanks again for sharing:)

  4. I am glad that here spirts are still good and gets around well. My mom had her scan and it was free and clear. She still has 3 more rounds of chemo left but is in good spirts. I will as always keep praying for your family. I know how hard this is. Keep the Hope going. Also I love the hat.

  5. So fun to hear about her crazy bike shenanigans!
    And, that she’s doing relatively well (minus her cave man communication techniques…though sounding like they’re on the ride to progress! 🙂 ).
    And, so sorry to hear about the domino affect of sleep circumstances to headaches.
    I trust that there’s a Coke somewhere nearby? 🙂

    love you !!

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