We will be heading downtown today, and tomorrow May 1st Thursday, Ella Joy will be getting Erwinia asparaginase which we need to go downtown an additional 12 times because she was allergic to the Peg asparaginase chemotherapy. Please pray for Ella Joy because this involves a very painful shot in her leg. We will be in and out of the hospital for the next month or two because the Erwinia asparaginase is typically given every other day. So, her first shot in the leg will be tomorrow. Please also pray that she would not be allergic to the Erwinia asparaginase as she was to the Peg asparaginase. We appreciate all your prayers!
After 2 weeks of not being able to get chemo because her counts were 300 & 400 which was not high enough for the needed 750 or above, this week, her levels rose to 1400! We are so incredibly thankful to God and for all your unceasing prayers! Also, a huge thank you is in store to Kim and Judy for helping us with rides and watching Asaphie this week! It was also great having Mike’s parents visit us from NY! We got to celebrate Easter together as well as Ella Joy’s birthday! High five, she is now officially 5.0!
Today’s spinal tap was better than the previous one. She cried a little bit, but did not feel the needle as much because the numbing cream helped more this time around. For the first time, Ella Joy got a new chemotherapy called doxorubicin (adriamycin) as well as new pills called dexamethasone (decadron). She will be taking these pills 2X a day 7 days on, 7 days off, and then 7 days on again. Please pray for Ella Joy, that God would continue to protect her body. This new hormone will once again increase her appetite but also has common side effects that include upset stomach, increased blood sugar in urine, irritability and mood changes as well as less resistance to infection and longer time for healing. Her new chemotherapy doxorubicin also has side effects that include nausea, low blood counts and mouth sores as well as hair loss.
Walking down a hallway, a doctor told Ella Joy that she liked her hair and bows. Dr. Morgan told that doctor that Ella Joy had extensions! Later, I told Dr. Morgan that it was her real hair, and she was shocked! They are getting thinner and thinner down to a couple of strands of hair, however, God has preserved 2 little piggies for her head.
There once was a little girl who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head. “Well,” she said, “I think I’ll braid my hair today.” So she did and she had a wonderful day. The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. “Hmmm..,” she said, “I think I’ll part my hair down the middle today.” So she did and she had a grand day. The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. “Well,” she said, “Today I’m going to wear my hair in a pony tail.” So she did, and she had a fun, fun day. The next day she woke up, looked in the mirror and noticed that there wasn’t a single hair on her head. “YAY!” she exclaimed. “I don’t have to fix my hair today!”
When I reflect on the Westminster catechism, I soon remember that my chief purpose is not my comfort or happiness, or for things to go my way, but my chief purpose is to exalt Him and delight in him eternally.
Question: What is the chief end of man?
Answer: Man’s chief end is to glorify God, and to enjoy him forever.
2 Bible verses that help me remember this chief purpose:
“Everyone who is called by my name, whom I created for my glory, whom I formed and made.” -Isaiah 43:7
May the glory of the LORD endure forever; may the LORD rejoice in his works – Psalm 104:31
This visit in particular, my heart was very heavy for other families at Luries. After hearing their stories, pains, and struggles, it reminded me of when the doctor told me that Ella Joy needed a bone marrow stem cell transplant and that she had a 30% or less chance to survive. We sounded the battle cry to pray for zero and negative, and that is exactly the miracle and prayer that Our Amazing God answered! I need to be careful and remind myself that my chief end is not when things go my way or even when God answers prayers, but my chief end is truly glorifying, enjoying, and delighting in Him forever and ever and ever!