10/17/18 BMT Day +168 No active gvhd

I was waiting for more news before I updated… and our scope was pushed back a couple times and it landed on Wednesday, today. I am overjoyed to share that her scope was a success! First off, Reese was amazing, I am always so proud of her. Second, I was able to chat with the GI doctor after he finished and he told me it was “better than he expected” and he didn’t see GVHD!! This is amazing, and exactly what we prayed for! The biopsies are still out, we are hoping for results on Friday (so probably on Monday) but in the preliminary report, her gut was listed as looking normal, not “friable” or any other adjective that we don’t want to hear. Incredible. So what does this mean? Reese does not have active GVHD, so we can start weaning steroids more quickly (once a week instead of every other week) and possibly look at some of her other immunosuppresents. This will allow her own immune system to begin to grow, so it can protect her. WIN!

On a nausea and food intake front, things are moving along, especially this week. Things really seem to be coming together for her and I am so happy to see tiny improvements each day. If you asked Reese, she would tell you that her biggest complaint is still pain. It haunts her, more pain than anyone, especially a preschooler, should have to endure. It is a careful and tricky balance, our doctors need to walk this difficult line, and wean pain meds to protect her but also cover her pain. We recently introduced new pain medicine for nerve pain. It is believed that she has been in pain for so long that her entire nervous system is affected. This dose had to start small and is slowly being increased each week.

Reese has managed to avoid the NG tube (nose feeding tube) for a month now. She has done this by being… Reese. She is willing to “work as a team” with me to make things happen.. like eating when she is scared. Today her TPN (IV nutrition) was decreased to 50%! This is amazing, such a feat for a little girl who has had such severe gut GVHD! Reese needs to hit 1200 calories a day to rid herself of her IV food. That is A LOT of soup, carrots, and edamame! And no, they will NOT throw in a double stuffed Oreo to kill a couple hundred calories, it all has to be healthy, of course. This is really hard and a tall order, even for Reese. I told my doctor that when they give me a DATE… an expected release date, if she isn’t eating her calories, I will seriously work on getting Reese to accept an NG tube. If it means we can leave and IV nutrition is what is holding us back, we will do it. But until we get that expected release date, I know that it is over a month away, and I will diligently continue to work with Reese on getting her calories the real way. With food.

I think Reese would also tell you that she looks forward to baths at her yellow house. Or a shower, take your pick. Why does this rank so high? For the past six months, Reese has taken a “bath” on a cold bathroom floor, sitting on a water absorbent pad, while I use a water bin and a washcloth. It’s true. When you enjoy your warm shower (hopefully with fantastic water pressure) tomorrow, think about this for a minute. It is awful for so many reasons, and each day, in her little voice, she asks if she can “get it over with” the minute she wakes up. That’s my girl, just like her mom, she wants bad stuff done yesterday. Then, when I get started, her tiny voice pleads, please make it fast. Why is my little girl subjected to this additional torture? It is not safe for her to be submerged in water, so her separate bathroom has no tub or shower. The BMT unit separates bathrooms for caregivers and patients, each room has two bathrooms. Every detail is thought out to protect Reese, in this state of the art building. And I need to be careful not to let any “water mist” out of my bathroom, or I would contaminate the perfect environment that is created for my immunosuppressed little girl. The environment and protocols that have saved her life, of course. But her first real bath (or shower, she can pick) will be epic.

Reese is getting stronger everyday. And who better to help her walk than Quinn, her identical twin and best and most enthusiastic supporter. When we told Quinn that Reese is strong enough to hold her hand, Quinn beamed with joy and kissed her head. Those two, along with their sister Claire, have and always will be my greatest happiness.

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