Glorify God & Enjoy Him forever!

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4/24/14

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

 and

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!

Oaks of Righteousness

ejflowers

April 22, 2014

Praise the Lord! Just in time for Ella Joy’s birthday … after 2 weeks of her ANC not making the cutoff for 750, once in the 300’s another week in the 400’s, this week at a Praise-the-Lord-amazing 1400, we are getting chemotherapy this week! Please pray for the spinal tap, and that everything from the numbing cream to the big needle insertion will go smoothly. Please also pray for the new chemo she is getting doxorubicin, and that she will take well to it. Thanks so much for your ceaseless prayers everyone!

April 10, 2014

For the past couple of weeks, Ella Joy had one bloody nose after another. I was so concerned that I called the hospital a few times. It seems to be caused by sores in her nose from the hd mtx chemotherapy. After we got her CBC back from the lab, we found out that her ANC at 300 was not high enough for her to get her chemotherapy for this week. Her ANC needed to be 750. So, we knew we would be going in for a blood transfusion instead of getting chemotherapy. When we got there, we got another CBC, and then Dr. Morgan told us we could not get a transfusion because her blood counts were not low enough. So, since her counts were too low for chemo, and too high for a transfusion, we could not do anything this week! However, we are still so thankful to Eddie and Daryl who helped us out this week! Please pray for Ella Joy’s ANC counts to get high enough so we can have chemotherapy on April 17th Thursday. Ella Joy’s immune system is so low that we often stay home most days and try to stay away from germs.     We praise the Lord we are finally done with all 4 rounds of hd mtx! This chemotherapy usually takes about a week, and so it was God’s grace that we cleared 2 times in 3 days, once in four days, and only once in 5 days.

Ella Joy told me a few times that her knees hurt and she could not walk, and then another time she told me that when she sits criss cross, it hurts her knees. Dr. Morgan told me that one of the side effects from all of the chemotherapy Ella Joy is getting is that she might develop osteoporosis. Please pray God would protect her bones.

While staying at the RMH, in addition to what Ella Joy is going through with her chemotherapy treatments, our hearts are so burdened with what is going on with other families who have become our friends through this challenging and difficult journey. One thing I know about myself is that if I am not rooted in God’s Word and prayer, I cannot have a solid foundation. “to grant to those who mourn in Zion— to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit; that they may be called oaks of righteousness, the planting of the LORD, that he may be glorified.” Isaiah 61:3. This Bible verse reminded me about something I read about great oak trees. “Because they are not visible like treetops, a tree’s root system is not given the appreciation it warrants. This configuration of underground tentacles is the source of health or illness for the tree, and when winds buffet the tree, it serves as an anchor. The root system of a mature oak tree can total hundreds of miles. An oak’s chief support, the taproot, grows vertically for some distance before branching out.” I pray that my taproot would be God’s Word and prayer! For all who are mourning, just like this verse in Isaiah, I pray that hearts would be filled instead with gladness. As we glorify Him through every circumstance and hardship in our lives, I pray that we would be a people known as oaks of righteousness … the planting of the Lord!  

To end this post, here is a video I found in the archives, mini oaks in the making …