Saturday, January 25, 2014

One week

It's been one week since this all started. Actually, it technically started two weeks ago when I noticed all of Grace's bruises and called and made an appointment with her pediatrician for the following week. That was January 15th.

At the pediatrician's they looked at Grace's bruises and said she's a rough-and-tumble girl and the bruises were totally normal. To seal the deal they did an iron test and said it was likely to be from anemia. That night in the bath I found a bruise I couldn't ignore. I took this photo below.

The next day, after dropping Grace off at preschool, I took the photo back to her pediatrician. The head doctor was there. He took one look and asked me to bring her back the next day. He thought she had an easily treatable condition called Henoch-Schonlein purpura. Another good friend of ours who is also a pediatrician thought it was ITP. It wasn't until Saturday that we learned that Grace likely had leukemia.

Leukemia. It's the word every parent fears. I remember I had just put the kids down for naps when the pediatrician called with the lab results. 13K platelets, 68 white blood cells and 30% blasted cells. All classic symptoms she told me. Get Grace to the ER immediately, she said, she had already called ahead and they were waiting for us. I called my parents and Chad and they all raced home. My parents took Luke and Chad and I packed an overnight bag and we took Grace to UCLA's emergency room.

UCLA was great. Her nose started bleeding so they got Grace platelets right away and took more blood tests. Unfortunately it wasn't until midnight that they realized that our insurance didn't cover UCLA and that we would need to be taken via ambulance that night to Children's Hospital.

Grace loved the ride. Granted, no sirens or flashing lights, but she was in a real-live ambulance with a very nice EMT who asked her about her ninja skills the whole time. "How long have you been a ninja?" "A lot of days," she answered. At the children's hospital Grace was greeted with a new toy and a ton of blood tests. Her new doctor asked her, "Why are you sick today?" "Because I eat a lot of my boogers," she told him. The poor kid didn't get to sleep until one o'clock in the morning. Her mommy didn't get to sleep until four.

She had a fever and vomiting the next two days and they pumped her full of antibiotics and a blood transfusion to help her fight the infection. It was then I started praising God for her bruise. Her nose bleed actually had the potential to be serious as her platelets were so low. If we had been home I would have handed her a tissue and thought nothing of it. Her fever would have been life threatening. At home I would have given her Tylenol and thought nothing of it until it would have been too late. But because we were already at the hospital when these things happened the medical team acted quickly and likely saved Grace's life.

On Monday Grace had her lumbar puncture with chemo, a bone marrow aspiration and a picc line inserted. She came out of anesthesia fighting. Literally. Kicking and bitting and yelling. But it was a relief to know she's a fighter. Later that day her doctors told us Grace likely had PreB-ALL or acute lymphocytic leukemia. That meant that cancer was in her blood but that it has a 90% cure rate. We were so relieved. Even though we knew we would have a fight ahead of us, it seemed we would win. We started to breath again. That was Monday.

On Thursday we were called into a private conference with two of Grace's main doctors. They had found chromosomal mutations on Grace's cancer cells. Grace has two conditions, one called Philadelphia Chromosome (+) and the other called Hyperdiploid. PH(+) effects less than 5% of pediatric cancer patients. The PH(+) condition causes Grace's cancer to not respond to even aggressive chemotherapy. But with new inhibitor drugs, there has been a huge increase in cure rates, from 20% cured before the medicine to 80% cured with it, for the first three years. After five years the rate drops to 75%.

Grace will likely need a much more aggressive chemotherapy therapy as well as the inhibitor which also carries a myriad of long-term side effects. It hit us like a train. I think we had been putting our hope in the statistics before but this was much harder. We were told we would have to stay in the hospital longer and see if Grace could qualify for a new study that would try a experimental inhibitor.

So that's where we are. The realization of what is going on comes and goes. I get very homesick for Luke but the fact that he has been able to visit with Grace yesterday and today has helped me tremendously. I've been so thankful that Grace has been feeling better the last two days and is eating and playing again. I've been so grateful for the outpouring of love that we've received from everyone, and all the help we've had from our parents and family. We're so thankful that day by day God has given us grace and courage...and for our Grace.


  1. Lis, My heart breaks not just for our Gracie, but for you and Chad. It's a long road, but not a lonely one. There is family and friends surrounded by God's heavenly warriors lined on each side of the path. We are rejoicing with you, and crying with you. We are on our knees, and our hearts are in our hands.
    Love you, Mom

  2. Our hearts are very touch by the story and we are filled with great compassion and are praying for Grace and the family every day. Let us know if there is anything we can do. We are here for you.

  3. It is so good that you posted photos and your story of discovery of The diagnosis. Many others can learn from it and act quickly. Our thoughts and prayers are with you all. Be sure to take care of tyopurselves during this stressful time. It will make you stronger for each other and for Gracie.