Ella is 4 years old now! And she'll make sure everyone knows that. Everything she says starts with "I'm four years old now…" It's a great reminder that at the end of the day Ella is just a normal, happy, confident four year old.
Let me start off by saying that I am by no means "a blogger." I can't promise I will keep updating this with every single piece of information… but I can promise I will update at some point. The amount of encouragement and prayers we've been given has meant the world to us. It is amazing to see the generosity and kindness that has continued to be shown toward Ella. She is joyful. She is content. She is fearless. She is my hero. Everyday seems to bring more information, more appts, more thoughts, more emotions, more everything.
Ella has now received six treatments of plasmapheresis, two rounds of chemo rituximab, three rounds of chemo cytoxan, more rounds of solumedrol than we can count, one round of IVIG and almost three months of daily oral steroids, blood pressure medication, iron supplements and several other medications as needed. Not to mention all the x-rays, cts, ultrasounds, biopsy and on-going blood draws for labs. When asked what her diagnosis is and I think- hmmm, do you want the long answer or the short answer. Ella has been diagnosed with P-ANCA Vasculitis which has caused kidney and lung damage. So, she has been diagnosed with Rapidly Progressive Glomerulonephritis in her kidneys. Vasculitis is an autoimmune disease that is triggered by an infection and basically your body begins to attack itself. What she has is very similar to Lupus and a lot of her treatments are the same treatments that Lupus patients receive. This will be a life-long journey for Ella. Once she is in "remission" it could be triggered to come back at anytime. Her kidneys have been 60% chronically damaged so a kidney transplant will be somewhere in Ella's future, time-frame unknown. We are unsure at this point what the lung damage is; however, will be seeing the pulmonologist soon.
So, here's the update-
Dr de Guzman (rheumatologist) and Dr Kale (nephrologist) have decided that Ella will not receive anymore rounds of cytoxan at this point. Her last treatment resulted in her white cell count dropping way too low and so therefore the risk does not outweigh the benefit anymore. She will begin a new medication on March 15th that will take the place of cytoxan. It should bring the same results with less toxicity to her body. She has an appt next week with Dr de Guzman and also with Dr Vece (pulmonologist). It will be her first time to see him. She will start this new medication, continue with regular labs and monthly appts with all three doctors. She will also continue with monthly infusions of IVIG for the next 6-8 months.
That's the long and short of it for right now. Things seem to change on a weekly and/or daily basis. What stays the same is Ella's sweet spirit. She continues to be happy-go-lucky and worry-free! Ella is teaching me what it truly means to be joyful. Her innocent personality and brave smile is amazing. Prayers are heard and answered. The journey is underway and the Lord has incredible things for Ella.
