Ella Joy had lost her appetite after the high dose chemo started. She had also lost her livelihood to do the things she used to love to do. Yesterday was the first day she actually ate more than a mango! She had Appa get her 2 egg white delight sandwiches from Micky D. and thanks to visiting friends she also ate duc and Korean rice cracker snacks. This was huge progress for Ella Joy. She also drew some designs to go along with many Bible verses we have put up in our room. Thank you to so many of you who are sending us encouraging Bible verses in fb messages. We read every single one of them and many times I write these verses post them up, and meditate on them each day.
Thank you for holding our hands and embracing us when we found out bad news after bad news after bad news that she had 90% leukemia blasts in her bone marrow and that the leukemia blasts in her spine multiplied rapidly and she will be needing the most aggressive possible chemo and radiation possible. We were devastated to hear this, but your encouragement and prayers are helping us through this challenging time. The one thing our oncologist told us is that the fact that it took a little more than a year for her to relapse was somewhat promising.
Out of all hospitals in the nation, there is only one that provides full day school for patients’ siblings. And God just knew how much this meant to me. I am so thankful to say that Asaph is enrolled in the Hutch school from Monday to Friday! This helps us tremendously as we care for Ella Joy. He knows I cannot have Asaph watching an iPad all day!
We have some very specific prayer requests.
1. Please pray the high dose chemo Ella Joy is getting will kill ALL the aggressive t-cell leukemia.
2. Results from Ella Joy’s CT and PET scan show that she still has fluid in her lungs as well as multiple abnormalities. Please pray that they would not be infections and that they would disappear with chemotherapy as her cold and hot flashes and fevers went away.
3. Please pray for especially painful erwinia chemo shots that Ella Joy needs to get in both her legs at the same time. She needs to get 12 total, and she is so terrified of getting them. We were successful in asking for j-tip to help with numbing which is a huge victory (it was against hospital policy to use a j-tip for this, but Mike and I challenged them and they agreed it was sensible and would change the hospital policy), but please pray for God to comfort Ella Joy as there are several more shots to come. (M, W, & F) for the next couple of weeks. Today is officially day 6 of her 28 day treatment plan. (This is just the 1st of many phases to come…) On day 15 & 22, she will get Vincristine. Please pray this chemotherapy would destroy every single cancer cell by interfering with its growth cycle.
4. As she continues to take dexamethasone which is a stronger hormone that may kill some cancer cells and increase the effectiveness of chemo, please pray her body would respond to it and all cancer cells would be eradicated forever!
5. Many of the drugs she is taking have severe side effects but please pray God would protect her from upset stomach, weak bones, and increased blood pressure from the dexamethasone as well as from the muscle weakness, and constipation from the vincristine. Her hair will once again fall out, but please pray she would not be sad again.
6. Please pray for the timing of radiation and that Ella Joy would be able to be scheduled at just the right times. Our oncologist told us that since Seattle is renown for transplant, the radiation time slots are sometimes difficult to schedule and may require us to do additional (full) cycles of chemo while we wait for a slot…
7. Please pray for ZERO and NEGATIVE so Ella Joy can get to transplant. Even when we eventually talk with the transplant team, there are so many life threatening things that could go wrong before, during, and after transplant, so we pray for wisdom to ask the right questions, and that God would give incredible insight to our transplant team.
8. Please pray Ella Joy would continue to eat and have livelihood to do some of the things she used to. I remember shortly after her surgery to put in her double lumen Hickman line, she caught a glimpse of herself in the mirror. She quickly looked away. She had not been herself for some time but the little moments, like when she is coloring with Asaph (and not fighting or arguing with him)… those are the moments I treasure.
It seems like it was just the other day she journaled how excited she was to go on spring break to the Mall of America. We had everything ready, Mike even got a rental car. Now, we will be spending spring break in a hospital room getting high dose chemo. I knew she would ask … about her birthday party we had carefully planned such a long time ago. I had to break the news to her that we will have to postpone it. She was sad, but understood. I am praying that she will survive this transplant so we can soon throw her the very best party ever!
We whole-heartedly believe Jehovah-Rapha is our restorer. Exodus 15:26 “the Lord who heals.” We pray Jesus will continue to heal our Ella Joy! Today I read, ” Nothing that causes us pain or suffering can withstand the healing touch of Jesus.”
Amen, a million times over!
“Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted.
But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.” – Isaiah 53:4-5
Please continue praying Saints of God!