12/28/18 Help the Next One in Line

Life is good!! We continue to count our incredible blessings and Reese continues to exceed my expectations outside the BMT isolation unit. She so badly wants to do everything her sisters do and it motivates her (Why can’t I jump like a froggy? Why won’t you let me climb out of my bed alone?)
Because Reese was on high dose steroids for so long combating GVHD, her bones are very fragile. A break or a stress fracture could happen so easily… so as much as I want to let her “try” physically difficult things, I need to be very thoughtful and careful. BUT, when she left the hospital a week ago, I still worried about her falling doing simple things like changing directions (because she did.) Now I have complete confidence in her ability to navigate unassisted, this is a big step and an example of how quickly she is getting stronger.

A standard BMT child will struggle with eating after transplant. There are a variety of reasons for this… taste buds change, recovery from mucositis, residual nausea, and plain old fear. Well, Reese has very real reasons to be experiencing all of these and then some. For months, the entire lining of her GI track was destroyed and shed itself. I remember the blood, the pain, the fear… it was something that is not found in nature, the result of her new t-cells attacking the lining of her gut and killing it. Not only did her body have to regrow all of these cells, it had to learn how to function again. She has been off TPN for a couple months and her eating was going really well when we left the hospital. She “requires” 1200 calories a day and she was only getting 300 from NG feeds (formula through her nose tube.) That’s a lot of food for a little girl who doesn’t love to eat by nature. Well, since we left the hospital, she has been eating a lot less. Basically, nothing on Day 1. Then a tiny bit better on Day 2, better on Day 3, etc. She is relearning habits and fighting fear and residual pain. Reese is still receiving extra feeds now and she also gets extra protein, to combat her protein-losing-enteropathy (still active GVHD.) This is also to assist her albumin, which has been 1.5-1.6 since we left. Because she is not showing any distress from this, the doctors are letting it ride, and supplementing protein.

I always knew that our nurses are unbelievable and have an incredible task in keeping patients like Reese safe. I know how hard their job is.. and it STILL surprised me how hard it is to keep up with Reese’s routine. Reese requires 23 different “meds” in a 24 hour period. This is 43 separate administrations. She takes everything by mouth, when she is awake. When she is sleeping, I sneak in her room throughout the night and put meds through her NG tube (and usually get caught by Claire.) In addition, she needs feeds, a shot that she dislikes, and her central line accessed and flushed. Then, she spends Mondays and Thursdays in clinic for 7-8 hours getting infusions of more meds that are IV. Leaving the house is a big deal and it will be for months. But we do it!! As you know I have the best team here in SF (Nonnie and Poppy are still here.) She loves to “feel the sun on her head” so we make it happen and have little excursions everyday. And feeling the sun is incredible, we are in California after all, and I personally love the fact that it is pleasant in December.

Today I DROVE A CAR!! The simple pleasures in life, I jammed my music and felt AMAZING! The last time I just went for a ride was early April and I really missed it. Today I played my old playlists, the ones from before. Before, when I was just a mom of three healthy little girls. They brought back the best memories, it was just what the doctor ordered, for me. Now, if you know me, you know that I don’t “kind of” do anything. So I didn’t just go to the grocery store, my maiden voyage was through the Santa Cruz mountains. The clearest way into the Universe is through a forest wilderness.
One of my old playlist songs is Humble and Kind, by Tim McGraw. I always loved that song and I can sing along every word. But today, one part rang clear.

Don’t take for granted the love this life gives you
When you get where you’re goin’
Don’t forget turn back around
Help the next one in line

I know that I will spend the rest of my life repaying the incredible love that has been shown to me. My blessings. I think about the next one in line. We have the power to make a difference, all of us in different ways. I will always be looking for my ways.
Last night after prayers Reese told God good news. She is so happy, so content, she just wanted Him to know. God bless my little girl and her sisters.

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