Day 2 in clinic

We are on day 12 of 28 of her steroids, and boy they are AWFUL!  Each day is challenge and each night seems even worse than the day.  The Dr says people usually just have to survive each day and check it off until they can get through these first 4 weeks of steroids and it seems to be 100% true.  I have never seem anyone act this way, certainly not a child.  We are spending almost all day long feeding her and she never ceases to be hungry.  We finish feeding her and try to put her down for a nap with minutes she is signing food and screaming to leave her room.  Last night I thought I could hardly bear to watch her for one more minute as her shaky little hands shoved food in her mouth as fast as she could, but still couldn’t be satisfied.  The pain I feel from watching her lately is sometimes so intense I feel buried.  Her weight has jumped from 27 lbs 2 oz last Friday to 29 lbs 9 oz this morning.  Yesterday we could visually see her stomach and face get larger throughout the day as her starving little body begged for satisfaction.  She doesn’t like anything sweet and will rarely even try them.  She somehow knows as soon as we offer if it’s sweet or salty and will not touch it if it’s sweet.  Her likes and dislikes can change in a minute.  Yesterday she ate a full can of green beans in no time.  Several slices of lunch meat plus lots of other stuff at 2:30 am and then was starving again in an hour.  She wakes up so hungry she just shakes and points at everything but will only eat a few things, and then the next day she hates those things.  I feel so lost at what I can give her and spend the day trying to keep her full.  She naps 20 min at most, most days and often isn’t even sleeping during that time she lays down. 

Today was our second clinic visit and there is no way to explain how I feel as she excitedly says “bye bye” when we are leaving anticipating something fun and screams as they take her vitals and draw her blood for the millionth time.  Today she wet through all over me again as she did at the first visit during her blood draw as she screamed.  She had had 6 dirty diapers by 1 pm and a bright red diaper rash the dr said looked yeasty so we’ve got Nystatin to treat that now.  Her poor bottom is so sore and she is constipated off and on from all the drugs.  Her levels were decent today

Hemoglobin: 9.1 (they infuse at 7.0, like to see it above 12.0)

Platelets: 78,000 (infuse at 10,000, they should be about 200,000)

These were both the highest levels I’ve seen throughout all her treatment.  Her ANC (absolute neutrophil count) was 100 meaning still no immune system.  Although there were a few baby neutrophils meaning her body is beginning to produce a few. 

We have made more big decisions in the last 24 hours with no time to think than I ever thought possible.  Usually it involves thinking about it on our own throughout the day and then making the split second decision over the phone during a one minute conversation.  I have learned that I knew nothing of the pain associated with so many horrible diseases such as cancer and already have much greater empathy for the other families who have or will cross this path.  This update probably sounds like quite a downer and I guess we don’t get to many great moments yet or positive news, and hope the future will bring more such moments.

But what we have had throughout it all is the Spirit of the Lord at the times when we needed it most and many many amazing and truly selfless individuals serving to willingly as the Lord’s hand on earth.  I have already been completely humbled to see so many helping us to survive each day.  To all our family and friends THANK YOU!  Thank you for your love and support and thank you for your prayers and fasting.  I plan to update throughout this process for our families future keepsake and so others can follow our journey along the way.