Long post ahead...
We are rejoicing in the fact that our Maggie is finally doing good concerning her kidney disorder. Over the last 7 months (since diagnosis of nephrotic syndrome) she has experienced 4 periods of relapse. A relapse being a time period where she takes major steps backwards and has an acute onset of her worst symptoms. She will go all the way back up on her protein spillage in her urine (to a +4, on a scale of 0-4, 4 being the worst), she will swell all over her body (especially in her face and belly), she will gain 3-5 pounds of fluid weight, and have an over all feeling of ick! When she has relapsed we would have to treat with her big dose of steroids daily and also give her a diuretic medication to help her loose the extra fluid, so her heart, lung and kidneys would not be overloaded. It has generally taken her around 2-3 weeks to get "turned back around" and have an improvement in her symptoms. Every one of her relapses has been associated with an illness. Most being, very mild viral illnesses...ex. runny nose, slight cough. Although one time, it was an ear infection too. So we have determined that anything that stimulates her immune system (like a cold) triggers her body into relapse.
Sooooo, that is why we are focusing so hard on keeping her well right now. In the last 7 months, we have never been able to wean completely OFF of the steroids. Long term, constant steroid exposure is not good for children. So we are so happy to report, that we are a mere DAYS away from weaning off of them for the first time. WOOHOO!!!! We are so excited and cautious at the same time. This would be a huge success for Mags, to come off of the steroids...even if it is just for a few weeks or a month. Although, we are so prayerful...that she will go into a more long term remission.
After our visit with her nephrologist a few weeks ago we were told that we had 2 months to get/keep her into remission, wean off the steroids and keep her well. Dr. Pena said that he considered Mags relapses to be "frequent", and generally he would move forward with more agressive treatment. But with the season we are in (cold, flu, RSV) and the fact that all relapses had been associated with an illness...he would give us one more chance (or another 2 month trial). After this visit is when we decided it was time to make some drastic changes.
We are hibernating at home, for lack of a better word. We are avoiding the general public at all cost. We have pulled Maggie out of her preschool and church (just too many other kids with germs). We are avoiding the grocery store, playdates and play yards. We have become Nazi's about washing our hands, eating loads of fruits/veggies and getting plenty of rest. We have also started Maggie on some homeopathic/nutritional supplements to help boost and balance her immune system, cleanse her liver and support healthy cell growth (my sweet girl takes 8 different medications/supplements daily, ugh).
We are very hopeful that this remission will last a while. If she relapses again. We will have to move forward with the more aggressive treatment plan. This will include a kidney biopsy, so we can identify and confirm exactly what the cells in her kidney look like and evaluate the kidney damage (this will mean anesthesia and an overnight hospital stay). Then we would begin to treat her with the next level of drugs. The medication is a chemo drug, called Cytoxan. Thankfully, the dose of Cytoxan will be smaller than the dosage an actual cancer patient would receive, and therefore hopefully the side effects will be smaller too. The treatment would be for 8-12 weeks. We are not certain yet if she would be a candidate for the at home, oral form of the Cytoxan or if she would have to be hospitalized for weekly IV infusions. We will just cross that bridge if we have too....
We would covet your prayers in the most sincere way! Specifically, prayer that she stays in remission, continues to wean off her steroids and stays well!!!!
Again, looking at Maggie you would hardly know she had any issue at all...and for this we are extremely thankful for this precious mercy from God. She is still mostly happy, energetic and indifferent to being homebound. Her sleep disruption is still the primary difficulty for her and me (just a side effect of 7 months of steroids). She gets up usually 2-3 times a night.
We have been enjoying the last week or so of SUNSHINE! Maggie helped Todd wash our cars in the driveway, and Sadie has been sitting in her high chair and exersaucer soaking up some sunshine (and Vitamin D) with our back door open. Some fresh air in the house....does a body good!
MUCH, much love to all...and thank you for your care and concern for our sweet family!
Leah
Some Daddy/Daughter time outside!
Some car washing cuties!
Sweet Sadie Rose soaking up some sunshine and fresh air...
Love this little grin!
P.S Stay tuned for an 8 months post all about our Sadie-bug. She will be 8 month old in 4 days!
