Oh, my baby girl.
This year has been a rough one. Even though it has been just over three years since you were diagnosed with nephrotic syndrome, this year has been the toughest. I had been so optimistic through it all. I knew the Lord would take care of you. I trusted that we would have a best case scenario and that you wouldn't relapse again. And then that the first medication (after prednisone) Mycophenolate would work for you. Then after a year and a half of that working I was sure the next one, Tacrolimus, would work. There was a six month period where it was working, but then you were complaining about stomach aches a lot last May so I took you in for a blood draw to check your Tacro trough levels. Well they were high. We dropped the dose and you started relapsing again. And again. And again. Your blood draws showed such inconsistent levels and we were constantly adjusting. You have had over 20 blood draws this past year. That is probably an underestimate. You ended up in the hospital in September because after you started relapsing the prednisone just wasn't working fast enough and you retained too much water. They had to give you infusions of albumin and lasix. Then you kept relapsing. So we had to schedule a kidney biopsy in January and then infusions to try the third and final drug available for your condition. I was a mess for months leading up to it. I have been so worried about it if would work or not and if the these Retuxin infusions worked that would mean your immune system would be wiped out. Its terrifying. But what choice did we have? You were an emotional mess because of the steroids and the doctors and you were miserable at home. We did the infusions in February. Once a week for four weeks we went in for 10 hour long infusions. Those days were long and hard on both you and me. But the instant the last one was over with it was like a weight had been lifted off your shoulders and your anxiety was gone. You were lighter and happier and our household started to get along again. You have been in therapy since November too which I think has helped you immensely.
We did a blood draw a few weeks ago to get a B-cell panel done and you have a zero count of B-cells! That is good news because it means the infusions worked and hopefully you can go 6-18 months without relapsing! At the same time I know that B-cells are an important part of your immune system and I am sick to my stomach that you had to do this drastic of therapy. The good news is though, that in March we got COVID-19 and you were definitely sicker than the other kids but you still did quite well through it. And we just had a cold this past weekend and you were sicker longer than the other kids but you have pulled out it just fine. And the best part is that you haven't relapsed! It seems as though every time you get sick, you relapse and become nephrotic again-but not since the infusions. I'm starting to feel relief for sure.
You are such a spunky little thing. You know your own mind and you aren't afraid to share it. It's hard some times, but you are so good at communicating that you can explain your position very eloquently and you can listen to other people's sides as well.
You have a hard time being the only girl. You want the boys to play dolls and make up with you (and Cohen is happy to most of the time) but you still wish you had a sister. I wish you had one too. But you are tough and you love your brothers.
You got your ears pierced on your birthday. You have wanted to for months. I am so proud of you. You were afraid of the needle and of it hurting and I didn't know if you would go through with it. I was a little surprised because I didn't know if you would willing get poked after so many medical pokes but you kept your cool even though I could tell that it hurt and you had some tears forming in your eyes. And when you were done you were so excited and I knew that you were proud of yourself. I'm proud of you too.
I am so glad I have you. Your spunk and sass sure add to our life and our family. You say the most clever things and make Dad and I laugh every day. I can't imagine my life without my darling daughter. We have so much fun together and I can't wait for all the adventures we will get to do together!
Love,
Mom
