Tuesday, January 25, 2011

i dont know what today is, dear friends.

thank you sweet husband for buying me this fancy shmancy android phone. you are correct that i would indeed use it for more than elmo videos on youtube and that addicive game angry birds. the best example is now at one a.m. in bed attempting to update everyone on piper...

and she is doing better. unfortunately because we are dealing with multiple issues we are in for quite the vacay at choa. super excited mommy is super excited to have guests who are not paid to take miss pipers temperature,

as of right now, pipers ng feeds are going well. she is currently getting ten ouncs over a twelve hour overnight period and two bolus one hour three ounce feeds during the day. surprisingly she is not only keeping all of that down but also drinking about eight ounces of pediasure throughout the day in addition to lots of water and crackers, rice, almonds, puffs, and the sugar off of mommys sour patch kids.

she will have her cmv levels checked again on wednsday to see if these mega doses of antibiotics are doing their job. they know that the virus will not go away until after her leukemia treatment is over and her immune system has matured but they do hope to supress it from flaring up as it did recently. her uti seems to be clearing up. her anc is still super low but that is expected with the cmv plus the antibiotics to treat the cmv. pipers onncologist has chosen to hold off on her chemo for at least one week. this makes me nervous but her blood counts literally can not be suppressed any more than they already are. lord, please allow her body to maintain the fight against leukemia as well as the fight against these viruses.

because piper has not been using her left leg, the muscles are very withered...dr lew had us go to get an ulltrasound to check if their is a visable reason she is suddenly unable to move it. hopefuly we will not be dealing with any nerve damage but wth the chemo she gets it would not be impossible. the good news we heard today is that the cmv has not traveled to her eyes as it sometimes does...i personally think its because they are making her intestines into a resort and have no reason to bother any other parts of her sweet self

and now we wait ...being in isolation is for the birds. the window to the hall is broken so we cannot look out their and the window to outside is looking right at about twelve maintnance men wrking hard at something or rather. piper is enjoying elmo in grouchland over and over and i am impressing myself by beating many, many levels of angry birds. hopefully the flu test will come back tomorrow negatively and piper can come off of isolation and we can resume our daily lunches out, shopping and visiting the fish and birds. seriously, if you have to get leukemia this is the place to get it.
i hope this wasnt too much rambling. alot is going on. alot is not. thankfully piper slept a little better last night and i am looking forward to having guests tomorrow. these are the best things to happen to the two of us since we checked in last thursday night.


  1. So very thankful to get your update. Still praying and thinking of you both.


  2. whoa, I missed the last post, so I was really surprised to read this. So sorry Susanna! Hang in there, I wish there were something I could do... if you think of something... seriously... please let me know!

  3. We are praying for you all constantly. Hope we can keep the lovely Linley sometime for a sleepover :) We love you guys.


  4. We are praying for all of you and so is our church family, Resurrection Pres. (daughter church of Redeemer). Thanks for your blog...I love hearing your "real" struggles and love your sense of humor. My husband's sister, Jena, has AML, and so cancer has entered our family over the past year and a half. My children and I will continue to pray for healing and God's mercy.
    ashlie johnson

  5. You have shown such wisdom and patience with the latest trials. Keep turning to God for everything you and your precious daughter need; He is faithful to provide and even knows before you do what tomorrow's bringing. You are a strong and sensitive mom who loves God...that's exactly what Piper relishes right now. I love you.