Hospital Stay, Day 13

(Grace naps a lot from the morphine and Benadryl. Best pain management is sleep I think.)

I don't know why. Last year I decided that I would memorize several old hymns. The day dream was that if I were ever captured by the Taliban then I would sing the hymns and they would be won over and all of the wars of the world would end. Strange, I know. No one was supposed to know that, but there you go.

I memorized "Great is Thy Faithfulness," and today I was singing it in the hospital elevator when I went to get my coffee. "Morning by morning, new mercies I see. All I have needed, thy hands have provided. Great is Thy faithfulness, Lord unto me." The reverb in the elevator is excellent, by the way, so I really enjoy singing there when it's empty.

Last night, or rather at two in the morning today, Grace had to go potty. I have to carry her since she is too weak to go by herself, plus there are eight tubes and a tower connected to her right now that get very tangled. In the light of the bathroom I noticed her mouth was a bloody, gooey mess. I called in the nurse who called the doctor who ordered platelets for her. Within an hour or so she had a transfusion. The sores in her mouth ooze blood and so they will work on keeping her platelets above 20K. This is the second time in three days she's needed a platelet transfusion for the same reason.

Yesterday I was cranky, lonely, bored, and tired. I was so ready to go home and be a family again. But when she needed the platelets all I could think was how grateful I was. All my anger and frustration melted, none of it mattered anymore. I am so grateful to the person who donated the platelets. And for the nurse who acted promptly. And for the doctor who was up all night so the order could go through. And the blood bank person who made sure it was a good match for Grace. I was overwhelmed with gratitude that all these people are protecting my daughter.

This morning God acted in His faithfulness to help Grace. He didn't look at my unfaithfulness, He worked off His own goodness and His promises to me and my family. I wish we weren't here. I wish Grace wasn't in constant pain. I wish a lot of things right now. But what matters is that she needs help and God has us in a place surrounded by people who are helping. His mercy is all we have needed, and He has certainly provided.

(I miss my boys)

The Haircut

Last night Chad pulled up the Hip Hats website that CHLA had recommended to us. To be honest I had forgotten about it. I had assumed there was no way on Earth that Grace would voluntarily cut her hair before it fell out. But I had noticed the hair brush full of hair for two days. We really liked the hair halo idea as it uses her own hair.

At her age, I'm not sure how she'd field the questions from other kids in passing about her bald head. I think a wig for public outings might make her more comfortable. This morning after showing her another handful of loose hair we showed her the website and asked her what she thought. I was floored when she said she'd do it.

Later today she told me she was pulling more of her hair out. She told me she thought that if she lost all of her hair she'd feel better. Again she surprised me with how well she took the news that her hair loss means the chemo is working, not that it will necessarily make her feel better.

She voluntarily took Ella along to Bambino's Kid Hair Saloon. She was amazing. I had stored up so many anxieties for this moment and she took it like it was the most natural thing in the world. No wonder, we had lots of people praying for this. And after it was gone, my brave, beautiful was still smiling. I knew she'd be beautiful without her hair. And she is.

Grace's clinical trial run down

Tomorrow we go back to the hospital for Grace to get her chemo and also to start the new clinical trial for her Ph(+) inhibitor, Dasatinib. For those of you wondering, we feel strongly that this new medicine will really help Grace, and here's a rundown on it.

Essentially Grace has a genetic mutation on two of her chromosomes within her cancer cells. They've switched places on her 8 and 22 chromosome (normally it's 9 and 22, more on this later). This translocation means that her cancer cells replicate like a kamikaze explosion, putting her into the high-risk category. It means that chemotherapy alone (even aggressive chemo) can't keep up against her genetic mutation. Back in the day, before the original inhibitor called Imatinib was created, cancer patients with this mutation were given a 20% chance of remission. After it's creation, the cure rate shot up to 80%.

The only problem with Imatinib is that patients can become immune to it. So they came up with a second generation of the medicine called Dasatinib, which is essentially the same drug as the first but will keep patients from becoming immune, therefore making cure rates even better. The FDA has not approved this drug yet, but trials on adults have been very promising. We thank God that Grace got accepted into the trial so she can have access to this medicine.

We've had a lot of recommendations for alternative therapies for Grace from friends. In order for Grace to stay in the trial we will have to limit other methods used. We're juicing and eating healthy but it's not likely that we'll be able to use herbal remedies or essential oils or food as medicine alternatives. We appreciate all the research our friends have done on these for us, but we do feel God leading us down another path for now. If that changes we'll be sure to reach out to you.

We'll see how Grace does with the meds tomorrow. Her regular chemo is starting to show it's bad side. Typical with the steroids she's taking as part of her regimen, she's swelling in her tummy and face. She's ALWAYS hungry, asking for salami, Pho soup and scrambled eggs all day long. No kidding, she eats more than me. I think that it's stretching out her tummy too quickly so she complains of her stomach hurting all day and is nauseous on top of that. She tires easily, so running, dancing, bikes and scooters are all out. She also gets legitimate mood swings and her sense of smell is heightened. Pretty much like being pregnant but without that "magical glow."

Please keep us in prayer for tomorrow, as I know you all do. We so appreciate all your love and concern and prayers. Know too, that we'll soon be doing a blood drive in honor of Grace in early March. As Grace has needed five blood transfusions in the last two weeks, we are thankful and in an eternal debt to blood and platelet donors.