Cupcake

Standard

photo-22Another day begins with no ANC, in fact, like many days, it simply states: No Data.  I sure am looking forward to the morning that begins with an ANC!  It has been 36 days at zero and I’m ready to get this show on the road!  Of course, another day with no blasts is pretty glorious!  But what we need is her marrow to be producing healthy cells and no leukemia cells.

This morning is the first morning in a long time that I awoke at my regular 6 am for shower, breakfast, and time to do things like this – write a post to keep everyone up to date.  Yesterday afternoon after Allistaire’s Ribavirin, she thankfully slept for a bit and I had a chance to sit out on the patio of the hospital soak in some early evening sun.  Then, I had a delightful phone call from one of the infectious disease doctors who told me that they had Allistaire’s RSV PCR (quantitative test) back and that while she still has RSV, it is in such low levels that they are going to give her a break from Ribavirin.  So no Ribavirin for at least a few days!  Sweet!  Thursday night they will do another nasal swab with the potential to resume Ribavirin starting Friday night – but who minds a few days off at least?  And maybe by then Allistaire will be getting some of her own blood cells zooming around that can fight this virus on its own.  The level of RSV right now is a cycle time of 32 which means that it takes 32 minutes for the virus to grow to a certain determined amount.  At the Bone Marrow Transplant Consult the doctor said that in order to go forward with transplant, they would not allow a cycle time of less than 20 but would greatly prefer a cycle time of 30 or greater.  So we are at this point even beyond, in a positive way, the range that they ideally want for Allistaire.  Or course, zero RSV would be the most optimal and we are still working toward that.  Her level of rhino virus is down a little but is still there.  This will just take time and fortunately is not something that will stand in the way of transplant.

It was quite a joy last night to not have to have the time pressure or irritation of Ribavirin.  Allistaire and I stayed up and I began doing a bit of packing to get her room ready for the big move.  On this Sunday, 4/21, in 5 days, the whole Cancer Care unit moves into the new building.  Everyone is pretty excited!  No one will have to share rooms anymore!  Everyone will have their own shower, a gigantic window, a couch that pulls out into a bed, a curtain that separates the caregiver area from the patient area, a refrigerator, sweet cabinets that allow staff to place things in your room from the outside hallway and you to retrieve them from inside your room and some sort of amazing air flow system that allows doctors and nurses to stand on one side of a line in the flooring and the patient on the other side without having to gown up if the patient is in isolation.  I’m sure there are a lot of amazing equipment and features that staff know all about that will elude me.  If you’re interested in checking out a few more details, here is a link to the hospital’s website:  Building Hope

Allistaire so very much enjoyed having Sten and Grandma JoMarie with us last week!  It was a great time for Allistaire to spend special time with Grandma and time just with her daddy.  And for me, it was quite enjoyable to have a break from the hospital and Ribavirin.  (By the way, did you notice in the picture of Allistaire with JoMarie – where do you think Allistaire got that cute nose and her chin?)

This morning I leave you at last, with a bit of video of the little lady herself.  I’ve had tremendous difficulty getting video added to the blog ever since they made some changes to WordPress.  So I’ve loaded the video up to YouTube so you can use the link to go check it out.  It’s a bit on the long side – 10 min, but hey, you’ve had nothing so far, so enjoy.  I just set my phone up on my leg and started recording so Allistaire had no idea which resulted in her just being her ordinary delightful silly self and I seriously cannot get enough of her!

Click here for the video of Cupcake Allistaire

8 responses »

  1. We are praying for you and your sweet family. Thank you for the update.

    Rejoice in our confident hope. Be patient in trouble, and keep on praying.
    Romans 12:12 NLT

  2. Still praying for a miracle healing, she is so cute and fun and talks alot for being so young. Glad JoMarie got to be there, I imagine she soaks up every minute with you all……..
    Be strong & of a good courage…! Fear not, nor be dismayed: for the LORD God… will be with thee; He will not fail thee, nor forsake thee, until thou hast finished all the work of the service of the house of the LORD.” (I Chron. 28: 20)
    Grace Regnier

  3. I am praying for healing and think of you often, strange since I hardly know you, but this has had an impact on me………so my prayers are there for you all, glad JoMarie got to have time with you all. Be strong & of a good courage…! Fear not, nor be dismayed: for the LORD God… will be with thee; He will not fail thee, nor forsake thee, until thou hast finished all the work of the service of the house of the LORD.” (I Chron. 28: 20)

    grace regnier

  4. She is one amazing ,precious little girl…delightful to see a few blessed moments of joy, and pure silliness with her mommy..!! God bless you, we are continuing our prayers for all of you….

  5. Oh my goodness, her personality is simply amazing, entertaining, and so much fun. Thank you for sharing.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s