1/27/19 IVIG & Shepherds

Up and down and all around.
Reese’s bout of the stomach flu also correlated with her IVIG levels quickly trending upward, interestingly. What is IVIG? Intravenous Immunoglobulin. After a bone marrow transplant, patients have an increased susceptibility to infections. So, they are given IVIG prophylactically, for many months after. What do immunoglobulins do? Basically, they attach to foreign substances, such as bacteria, and assist in destroying them. It’s a blood product, from blood donors. I’ve mentioned before that we expected Reese to receive IVIG infusions once a month after transplant. Because of her gut GVHD she is leaky, and she was receiving IVIG 3x a WEEK for many months. Sometime last fall, we were able to go down to 2x a week. This is where we have sat for a few months, with slow movement. Each week, her IVIG levels are measured, and they have remained pretty steady around the minimum acceptable level of 500, even with a very large dose (4 hours worth, 2x a week.) Well, along with a few other things I have mentioned, her IVIG levels shot up quickly right after her Rotavirus (stomach flu.) Her last level was 1,820. So we are now spacing her to 1x a week!!! I knew it would happen, but I thought it would be a slow drift for weeks/months. Bam! Here we are, celebrating! She is really healing. This will change our clinic schedule. Not yet… it happened too quickly and too late in the week to change much for this week. But, it will eliminate a clinic day for us going forward, a very long clinic day. Go Reese, go! My goal would be to get her down to 1x a week before we head home, that’s one time I need to drive her downtown to Lurie for the day.
Simultaneously, Reese’s blood tests went a little wonky, in a negative way. Her liver numbers shot up and her ANC went down. We are doing some investigating to see why this is happening to her liver, now. The thought is that suddenly, her Posaconazole (anti fungal prophylactic med) level went too high, upsetting her liver function. So we tested it on Thursday and yep, it more than doubled. Curious. As for her ANC, it dropped below 1,000 for the first time since right after transplant. This also happened quickly, at the same time, and the doctors have a thought that it might be her Valganciclovir (CMV prophylactic med), suddenly upsetting her counts (this is a side effect of Valganciclovir, neutropenia.) We aren’t doing anything about that yet, we need another CBC tomorrow to confirm it’s not a fluke. Reese is still on a crazy amount of medicine, and while we are weaning and saying goodbye to some big dogs (Ativan goes off this week, after a two month wean, and nine months on) there is still a lot to go.
So how is Reese? She has really great days. She is growing stronger by the moment, and it is such a joy to watch. She rode a tricycle with her sisters yesterday, her tiny legs working so hard to peddle a few feet (“I am working. I’m making my legs stronger.”) This weekend she went to the beach and the SF Botanic Gardens. She is a force. She always has been.
Unfortunately, she is still plagued by a really bad morning every few days. It lasts a few hours and she is miserable. She threw up her NG tube, again, on Saturday. But I left it out. And she has been eating REALLY well since. A new trend? We will see what the doctors say tomorrow. She would love to leave it out, it is very upsetting to her, to have an NG tube in her nose.
Yesterday she caught me off guard. She gazed downward, sad, and in that innocent little 4-year-old voice, “Mommy, it’s hard to be Reesey.” Matter of fact. My heart, crushed.
I asked why.
She said, sadly, keeping her gaze downward in shame, “Reesey is a girl who needs nose toobies.”
Among other things. Reesey is also a girl who has endured more pain than almost everyone who will read this. But, Reesey is also a girl who prevails, a fighter, a constant answer seeker, a comic with the sweetest giggle you will ever hear. And she sees the rainbow during her storms, and keeps her eye out for more, insisting on more. Keep fighting little Reese, and hold your head high. Your team is behind you.


Speaking of our team, another BMT mom was telling me about her situation. She mentioned the hardest part of her journey is that she is the only one “all in” on her daughter’s journey. She has people who dabble, part time. It got me thinking. “All in.” That’s a big concept, that’s really hard. In a world that is full of joy… fun… life. A world that is full of eas(ier) paths and lots of choices. Do you know how many people have gone “All in” for Reese? Starting last December of ’17, dropping everything, to be all in, by her side, all these months? SIX. Me, Chris, Nonnie, Poppy, Quinn and Claire. God bless Reese and my family of givers. My daughters may be missing some preschool, but they are getting a magnificent lesson in love, empathy, and our role as shepherds of those less fortunate, those in need. Those we love.

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