Pressing On

Today is the 1st day of May and also the first day of many doctor appts and infusion center visits this month.  We learned at Ella's last check-up the blood and protein levels in her urine are still elevated.  It's high enough for the need to continue with another 4 week treatment of Solumedrol infusions once a week.  This is the third time in 2013 she's having to do this.  (Actually, out of the 18 weeks we've had in 2013 she's received infusions during 13 of them)  At the end of the four weeks they will do another urinalysis to check the levels.  If they are still high then another kidney biopsy will be required… and probably back to chemo cytoxan.  But I'm not going to get too far ahead of myself… So, on Thursday, April 25th Ella received the first of the four Solumedrol infusions and also an IVIG infusion.  (She will continue to get IVIG for 6-8 months)  Those make for very long, 8-hour days at the hospital.  Fortunately, Ella doesn't seem too affected by the infusions other than not liking when the IV gets put in!

Unfortunately, Ella picked up a cough over the last week.  I took her to the pediatrician today to get it checked on and she has an ear infection and tested positive for strep throat!  She already started penicillin, which is the only antibiotic safe for her at this time.  She has not spiked a fever and has continued being her happy, cheerful self.  We just need to watch her closely because of the fear that an infection could cause the P-ANCA antibodies to come back.  Also, because of her compromised immune system there might be a need for IV antibiotics as well.  Within the first 12 months of being diagnosed with an autoimmune disorder such as vasculitis there is an 80% chance the antibodies will come back.  (if not monitored well!)  (which we are doing!!)  :)  We will continue to be hopeful and "press on" toward the goal of Ella being in remission!

What's next… tomorrow morning Ella will receive a Solumedrol infusion at 9:00am.  I am not sure if they will draw blood to run numbers or not, sometimes they do and sometimes they don't.  My goal is to try and keep the blog updated on a weekly basis.  There is a lot going on this month and we appreciate prayers for pleads of healing.  I do not want to discount the blessings we have received along the way though.  Ella continues to be joyful, energetic, happy and loving.  She's full of life!  She is growing as a person and we've been told she is the most compliant 4 year old patient they've ever seen.  And Alyssa is the most supportive sister ever.  She protects Ella, takes up for Ella and sometimes even wrestles with Ella.  Their relationship is amazing to watch and I know the Lord put their two personalities together for a purpose.  They are just beginning to learn what it means to follow Christ and I know they are going to do amazing things for the kingdom!  I remind myself everyday that God is in control and not me.  We receive incredible encouragement from family and friends and I know I say it often but it's true… we couldn't do this without you!