people will never forget how you made them feel

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5-30-14

We are so grateful for your faithful prayers! Thank you so much for following our blog and praying alongside us! Ella Joy’s counts were high enough for chemo this week! Praise the Lord! She got a spinal tap as well as cyclophosphamide also known as Cytoxan. It was a long full day, but we were thankful to get out a little earlier because she was well hydrated early in the morning. A huge thank you to Sunny for helping with watching Asaph again! Also, a huge thank you to Mr. Schrieber for giving us a ride downtown! Also, a special thanks to LJ and Marissa for visiting Ella Joy this week. We are going back to the cytarabine subQ injections that I will continue to give her in the leg at home. We will be doing it for 4 days on, 3 days off, and 4 days on again. In addition to the leg injections, we will also be giving her thioguanine pills for 14 days which are very similar to the 6mp pills we gave her a while back. Please pray for me to have skillful hands and that I would be able to administer these chemo shots without any problems. Please pray God would comfort Ella Joy so she would not hide under the table or be afraid and cry when it is time to administer these shots. I need to be on top of things and always give her Zofran a half an hour before the injections because they make her extremely nauseous.

Please pray for her next spinal tap which will be on June 5th Thursday. In addition to the spinal tap, she will get the cytarabine chemotherapy as well as IV and blood counts.

Her last pigtail more recently fell out, and the hair that she was growing back is quickly falling out again. Every single morning, I always do her hair in the same spot in her bedroom and I always let her pick out the bows. When her last pigtail fell out, we skipped that ritual and I never mentioned it. One day she said, “Mama, I know why you don’t do my hair anymore.” I asked her, “Why is that?” She replied, “It is because I don’t have hair anymore!” Even though the little hair she has is falling out again, and she has gained a significant amount of weight because of the hormones she had been taking, I always try to remind her how beautiful she is. How lovely God has made her.     “Man looks at the outward appearance, but the LORD looks at the heart.” – I Samuel 16:7 and her heart is just bursting at the seams singing praise songs to Jesus! We recently moved an old piano from my childhood home to ours. Everyday I play it, she has been learning the “oldie but goodie” praise songs I sang when I was in youth group. Ever since we got the piano, she sits beside me and insists to sing Jesus Name Above All Names, and O Heavenly Father several times a day! She asks me, “Can we just sing it 15 more times? Please!”

I have been reflecting lately on the experiences I have had at Luries and at RMH, and also all the interactions I have had with so many friends and others who have helped our family. I cannot be more thankful for the wonderful and amazing people God has placed in our lives! Being in the hospital setting as frequently as we are, you encounter so many different health care professionals. Some are excellent and you can tell they love what they do. Others are not as excellent and do not seem to love their job. Most of them know how to do their jobs (to be honest I watch them so closely that I can do almost everything they do) but it is how they interact with the children and families that makes all the difference! Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” I realize that instead of complaining in my heart when things do not go the way I would like, or when people do not meet my standards… I want to be that parent that prays for and flashes a huge smile at them so they would leave our room humming a praise song to God as they go on to the next patient.  

Do your best to present yourself to God as one approved, a worker who does not need to be ashamed and who correctly handles the word of truth. – 2 Timothy 2:15

I want to be a worker who is approved before God and I want to be the type of person who makes others feel good. It is so easy to love the friends who have been supporting us from the beginning and following our blog and praying for us. It is easy to be thankful for our friends who have been helping us with rides and helping with watching Asaph. However, the real challenge is to love people who might not be as easy to love. This is where I need your prayers and the Lord’s help!

Thank you so much for your continual unceasing prayers! We are incredibly thankful for you! Please never stop, never give up praying for our Ella Joy!    

Speaking of “oldies but goodies,” as Ella Joy fights her battle against cancer everyday, we know she is not alone. She is fighting in the Lord’s Army.

 

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I believe in Christianity … by it I see everything else

5/20/14

Update: We just found out that Ella Joy’s ANC (white blood cells @ 0.9) is too low for chemotherapy this week. Please pray that God would miraculously raise her white blood cells and that her ANC would rise from 306 to 750, so she can get chemotherapy next week on Thursday May 29th. He has done it before, and we believe He is more than able to do it again! Please also pray that God would protect her little body as her immune system is dangerously low. We need your prayers warriors! Thank you so much for your faithful prayers!

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5-14-14

Thank you so very much once again for your prayers this week! Ella Joy’s 5th and 6th rounds of erwinia asparaginase went well without any allergic reactions! All glory to God!  A special thanks to Bryan and Sunny for helping out with watching Asaph this week! If her counts are high enough, then the next time we will be getting chemo is on May 22nd Thursday. Please pray for Ella Joy as this particular Cytoxan chemotherapy will go from morning into the late night. Cytoxan also known as Cyclophosphamide destroys cancer cells by interfering with the cancer cell’s growth cycle. It is an important chemo for Ella Joy, however the side effects include nausea, vomiting, loss of appetite, hair loss, and low blood counts. Furthermore, please pray that this chemo will not cause bladder irritation or heart damage. Also, please pray that I would be diligent in giving her plenty of liquids before, during, and even after this round of Cytoxan. Lastly, this chemo causes a metal taste in the mouth. Please pray for Ella Joy as she is very sensitive to the taste of this chemotherapy. May God protect her body and all her senses as she has cytoxan IV over an hour followed by 6 hours of IV fluids.        

On the 18th oncology floor, there are many times we wait in the lounge area before we start Ella Joy’s chemotherapy treatment. One day a man and his wife approached me. This was their first time at the hospital and they were waiting to see if their child had cancer. They asked some questions about the doctors and nurses, and then I will never forget when the man asked me, “how are you so calm through all of this? You are going through a lot, but you seem at peace. How is this?”

I wish I could boast about being prayerful and fueled in His Word, but many times I am scrambling to get to clinic without even having opened my Bible or having uttered a prayer. We eventually did talk about God and the peace He brings, but now that I think back, I wish I had said this to the couple:

I believe in Christianity as I believe that the sun has risen: not only because I see it, but because by it I see everything else.” – C. S. Lewis

My prayer for our family and Ella Joy is that we might see everything with His spiritual eyes. That our thoughts would stem from the wisdom from the Word of God. And that we would not only believe in Jesus, but by Him, see everything else … including Ella Joy’s fight against cancer.

We cannot thank you enough for your prayers! We appreciate, covet and need your prayers!  Please never stop praying for our Ella Joy!   

trust an unknown future to a known God

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5/9/14

This week, we had our first four rounds of erwinia asparaginase on Thursday, Monday, Wednesday, and Friday. These shots do not get any easier for Ella Joy as she cries and wails through each painful injection. We also had another round of vincristine and doxorubicin, but on our way home, these chemo drugs made her nauseous and she threw up. I definitely need to remember to give her more zofran on the tougher chemo days. We thank you so very much for all your faithful prayers, because there have been no allergic reactions yet, so we thank God that she is taking well to the erwinia asparaginase. A huge thank you to Kelly and Vicki for helping with Asaph this week!

We ask for your continual prayers as we have her 5th and 6th erwinia asparaginase on Monday (5/12), and Wednesday (5/14). Please pray that God would continue to protect her body and that she would not be allergic to this chemotherapy. She is continuing to take her dexamethazone pills for the last 7 days this week, which makes her extremely irritable and moody in addition to her already sassy little self. These steroids also make her very hungry for any and all foods that we many times do not have readily available in the house.

It was a nice break from the hospital setting to go to her kindergarten konnection between chemo treatments. However, there are many unknowns at this point. We do not know who her principal will be, we do not know who her ½ day kindergarten teacher will be, and most importantly, we are not even sure which school she will be at. It all depends on how many people register for ½ day kindergarten from our school district. Please pray that she would be able to stay at our walking distance Corron Elementary School for ½ day kindergarten so I can be a minute away in case of any emergencies.

My heart was so heavy when a mother at Luries shared with me about her son whose cancer came back 3 times, and the doctor told her, “It is hopeless.” Another mother shared with me that her daughter had cancer when she was just a little baby, and now 9 years later, they found a new cancer in her little girl.  

It is times like this I need to open my Bible and focus:

We rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” -Romans 5:2-5

and of course, one of my all time favorites I will never grow tired of meditating on:

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. – Jeremiah 29:11

Corrie ten Boom once said, “Never be afraid to trust an unknown future to a known God.”

We thank God that Ella Joy is now in her delayed intensification stage of chemotherapy. In a couple of months, if everything goes according to plan, she she will only have to go to Luries once a month for chemotherapy. There is no way of knowing what will happen tomorrow, the next month, or the next year, but we know that God is sovereign. Our prayers are not always answered in the ways we expect, but He has never left our side, not even for a moment! From October until this very day, He has provided the most amazing individuals to help us with rides and watching Asaph so I can focus on Ella Joy’s chemotherapy treatment. There are seriously too many markers of His faithfulness to count! So many friends he has placed in our lives to help encourage and support us.  We are so incredibly thankful to God for our faithful friends who are following our blog and adding daily to the storehouses of prayer for our Ella Joy!  

Whether it is something as small as the unknown of Ella Joy’s kindergarten situation, or the huge unknown of the future of her health, please pray that our family would, “never be afraid to trust an unknown future to a known God.”  

 

All heroes are shadows of Christ

5/1/14

Today is marked as the national day of prayer! Thank you so very much to everyone praying nonstop for our Ella Joy! We truly appreciate all your love and support! Thank you also to Eddie and Elizabeth for helping us out this week with rides and watching Asaph! Ella Joy had her chemotherapy vincristine as well as doxorubicin. However, it was the erwinia asparaginase that was the most painful for her as it came in the form of a deep shot in her leg with a long needle. It was painful to watch as she was clinging onto me and crying while they poked her port and leg at the same time.

Please continue praying that God would give Ella Joy supernatural strength and that she would be brave as she will have to get this painful leg shot 11 more times on 11 different days. We are so thankful to God that she did not have an allergic reaction to this dose of Erwinia asparaginase this first time around. Please continue praying for the rest of the 11 doses, that she would take well to this chemo. It was the 3rd round of chemotherapy when she developed an allergic reaction to peg asaparaginase a while back.

We are heading downtown on Sunday and then we will have our next chemo visit on Monday May 5th, and then again on Wednesday May 7th. As crazy as it sounds, we will come back home on May 8th to go to Ella Joy’s Kindergarten Konnection where she will see her classroom for the first time and meet her teacher! And then we head back to Luries for her Friday May 9th chemotherapy visit. We will only have a short weekend before we are back again for her next week of chemo on Monday May 12th as well as Wednesday May 14th. Please pray that everything would go smoothly as we will be traveling back and forth a good amount.

In John Piper’s Don’t Waste Your Life, I thought it was so profound when he said that “All heroes are shadows of Christ.”

With The Amazing Spider-Man 2 just coming out into theatres, although I have not yet watched it, I read a review that stated, “With the emergence of Electro, Peter must confront a foe far more powerful than he.”

Reading this review made me so thankful that we have a God far more powerful than anyone or anything! Our almighty and all-powerful super hero!

He could control the weather and rebuke the wind (Mark 4:39).
He could heal damaged eyes with His spit (John 9:1-7). So that the works of God might be displayed in him.
He could call out to dead bodies (Lazarus) and make the dead person’s soul go back into it (John 11:38-44)
He could fly (Acts 1:9-12) and a cloud received him.
He was God (John 1:1, Colossians 2:9) Son of God was the Word, the fullness of the deity in bodily form.

Some verses that encourage me and remind me of His amazing power!

Isaiah 40:29
He gives strength to the weary and increases the power of the weak.

Ephesians 6:10
Finally, be strong in the Lord and in his mighty power.

2 Corinthians 12:9-10
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Psalm 28:7-8
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song. The LORD is the strength of his people, a fortress of salvation for his anointed one.

Isaiah 40:29-31
He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

If what Piper said about all heroes being shadows of Christ interests you, then please watch this video of mini superheroes … mini shadows of Christ …
http://www.youtube.com/watch?v=PA1VlW_2fmo

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http://www.youtube.com/watch?v=PA1VlW_2fmo