Give thanks with a grateful heart

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 11/27/13

Today we spent Asaph’s birthday at Lurie’s.  I only realized it was his birthday after Ella Joy got her IV, and while we were waiting for her spinal tap and chemotherapy.  I felt so bad, but thankfully one of the volunteers had everyone in the craft/play room sing happy birthday to Asaph, and he felt super special.  Also, so thankful Ellie was there to help watch over and love on him.  Thank you to everyone for praying for Ella Joy’s spinal taps.  I realize that according to Dr. Morgan, it does not always go over so easily for the majority of the children, so the fact that Ella Joy has been doing great with the spinal taps is a testament of stored up prayers that we cannot thank our prayer warriors enough for!  Dr. Morgan also mentioned that next week, in addition to her chemotherapy and spinal tap, Ella Joy will most likely need a blood transfusion.  Please pray that God would continue to guard Ella Joy’s heart and protect her body & good cells.  She has been in good spirits lately.  At the very beginning when she started getting chemotherapy, she was very tired and needed to rest her head frequently.  Then, when she was taking prednisone, she was extremely moody and noticeably gained a good amount of weight.  Now, she seems to be more active and energetic, however she hasn’t been eating as much as she used to.  Please pray that Ella Joy would be able to eat, drink, stay hydrated and get the nutrients she needs.

 This Thanksgiving, there is so much to be thankful for!  I am so thankful for an amazing husband who works non-stop around the clock, yet makes time to help out with Ella Joy’s appointments when needed.  I am so thankful for an amazing son who always roots for Ella Joy when she is taking her meds and when she is finished, he shouts out with enthusiasm, “Good job Ella Joy!”  I am so thankful for my daughter Ella Joy … whenever I get sad and I think about my dad who passed away from liver cancer, I always tell her “I miss Ah Gong.” And without fail, she always comforts me and says, “Don’t worry, when you go to heaven, you will see him again.”  I am so thankful for all the prayers being lifted up for our family and for our Ella Joy.  Our friends and family have been so incredibly supportive and helpful to us, and there have been so many people we never met personally, but we have connected with because God brought these people into our lives to encourage & bless us and help us pray for Ella Joy.  I am so thankful that God allowed me to discover Ella Joy’s enlarged lymph node that one day I was tickling her leg.  I am so thankful that after she was diagnosed with Stage 4 non-Hodgkins lymphoma cancer, that we were able to prayerfully make the right decision to get treatment at Ann & Robert H. Lurie Children’s Hospital.  I am so thankful for Dr. Morgan and all the pediatric nurses and workers we see on a daily basis every Thursday.  I am so thankful God has been providing rides and great help to watch over Asaph every week,  I am so thankful for the Ronald McDonald House staff & volunteers and how we are able to stay there every week.  I am so thankful to God for bringing the most incredible people into our lives who teach us what it means to be generous.  I am so thankful for a God who is love … “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” – John 3:16               

 This thanksgiving, instead of complaining about what I don’t have, or what I don’t want, I want to gaze at Jesus and lay all my complaints and burdens at the foot of the cross and say, “Thank you Jesus, thank you Jesus, thank you Jesus.”

 This thanksgiving, I want to give thanks with a grateful heart.  

Praise the Lord!  

Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!  – Psalm 106:1

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Lift your hands up

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11/21/13

 This week, Ella Joy’s blood counts were much better, so she was able to get the Cytoxan followed by 6 hours of fluids.  She also had her second spinal tap without anesthesia.  Tomorrow I am giving my first Ara-C sub Q injection to her, and I am so nervous about it!  Please pray I would have steady hands and that she would be brave and cooperative so it will be easier to give her the shots.  Also, I need to give her Mercaotopurine or Purinethol 6 MP.  I found that crushing the 6 MP and mixing it with some Sunny D might do the trick.  A huge thanks to Kelly and Jenny for helping watch Asaphie at Lurie, it really made the long day at the hospital a lot easier with their helping hands and big hearts. 

I remember when I was in college I found myself caught in a scam when I was trying to buy my parents a “travel/cruise” gift for their anniversary.  The company would not give me my money back even though I called them every day for a few months.  I remember feeling so helpless because I was so naïve for falling for the scam.  I once again called the company expecting to hear the same thing, “sorry, no refunds!”  While waiting I remembered I had recently read the Bible that morning: “ So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning.  When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword.”  – Exodus 17:10-13. I know it might sound silly, but as I was waiting for the customer representative, I decided to hold my hands up.  As I did it, I prayed that I could get a refund.  I started crying as I was praying out loud, and I didn’t realize it, but a customer representative was listening to me, and he felt so bad he just gave me the refund right there on the spot.  Victory was received as Moses lifted his hands to Heaven in a symbolic act of prayer and surrender.  In the same way, we want to thank all our friends who have been standing beside us in prayer for our Ella Joy.  We covet all your storehouses of prayers!  And the times it gets tough and our hands grow tired, we have so many Aarons and Hurs who help us hold our hands up.

When I walked into the VCOB to take Ella Joy and Asaph to Awana, it was so touching to see so many families wearing the shirts to support our family in prayer.  It always blesses us to read comments of our friends praying for Ella Joy and posting Bible verses, and seeing pictures on Ella Joy’s prayer support page on fb of families who are praying together for Ella Joy.  When we see our friends and family coming together to pray and support us, it really is such an amazing blessing that comes from the Lord.  We know we cannot do this alone.  We are still at the beginning of a couple of hard and challenging years and there will be many times our hands and feet and bodies will grow weary.  (especially for Ella Joy).  But we will not lose heart because we have phenomenal friends, so much prayer support, and a loving, relentless, faithful, awesome God who is also the Great Physician and Healer who will never leave us . . .

“And surely I am with you always, to the very end of the age.” Matthew 28:20

Nothing but the Blood of Jesus

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11/14/13

Today, we were prepared for Ella Joy to get a spinal tap and Cyclophosphamide (or Cytoxan) over IV for one hour, followed by 6 hours of fluid.  So, that morning, I followed Ella Joy around with a water bottle, making sure she was super hydrated for this chemo so she would not have bladder irritation.  However, we never got to the Cytoxan.  Dr. Morgan kept assuring us Ella Joy’s blood counts would probably be fine, but we just had to check the final counts.  When she got the results, she was surprised and had the blood work done again.  Ella Joy was due for a blood transfusion!  She seemed lively and happy, but her counts were very low!  7.3 to be exact!  So thankful God allowed her to have her first blood transfusion while Mike and I were there to be with her.  Also, today was the first spinal tap without anesthesia, and it went absolutely perfectly!  Thanks to everyone’s prayers!  So, now that her blood count is up, although it was still a long day at the hospital, we will be anticipating another long one next week when she gets the Cytoxan chemotherapy on Nov. 21st.  We were incredibly thankful to Lois and LJ who literally went from watching over Asaphie early in the morning to afternoon, straight to their own daughter’s appointment.  It really touches our hearts that we have such amazing and generous friends who sacrifice their time and energy to help our family.  Even after Ella Joy’s blood transfusion, Mike had a surprise bag of groceries Jannie had dropped off at the hospital.  And my sister Joanne came downtown to spend time with us and bring us back home.  It was best said in my children’s Jesus Storybook Bible, “God created everything in his world to reflect him like a mirror – to show us what he is like, to help us know him, to make our hearts sing.”  We are so very thankful for everyone who has been helping us, praying for us, and loving our family.  What a beautiful picture of God’s family!  We are so thankful for each and every single one of you!

Some prayer requests: please pray for Ella Joy’s blood counts to stay high for this coming Thursday so she can get her cytoxan chemotherapy which usually lowers blood counts 1-2 weeks after treatment.  Please pray there will be no side effects of bladder irritation or heart damage.  Also, please pray for us to learn how to give Ella Joy Cytarabine subQ injections daily at home.   This one causes loss of appetite and nausea, vomiting, mouth sores, and low blood counts, so please pray God would give her supernatural strength during this time.

After Ella Joy’s blood transfusion, color came back to her cheeks and lips, and she seemed to have the giggles.  She was in good spirits before the transfusion, but afterwards, she seemed super charged!  I thought about all the people who donated their O+ blood in that little bag to help my little Ella Joy, and I was so grateful.  Then, I started to think about this one song I sang when I was little, “What can wash away my sin?  Nothing but the blood of Jesus; What can make me whole again? Nothing but the blood of Jesus.  While Ella Joy needed a physical blood transplant, I realized I needed a spiritual one.  I needed to get the Word of God pumping through my veins.  I needed to get back to my First Love when people in college called me a scribe because I loved to copy the books of the Bible on loose leaf paper.  I needed to get back to a heart of repentance and praying “in the Spirit on all occasions with all kinds of prayers and requests.” Ephesians 6:18.  In the Old Testament, God required the blood of animal sacrifices to provide a temporary covering of sins and to foreshadow the perfect and complete sacrifice of Jesus Christ whose blood was shed on the cross for us.  So thankful for His perfect blood that covers over all my sins!

For such a time as this …

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11/11/13

Update: the nurse just told us we got the results from the radiologist, and unfortunately, there are several lymph nodes in Ella Joy’s body that are measuring larger than one cm.  Some of the areas include the largest ones in her neck, stomach and abdomen.  We will need to go downtown Tuesday (tomorrow) and get a PET SCAN Wednesday and have the long day from 8am-8pm on Thursday.  So we are downtown longer than we had previously anticipated.  We urge you to continue praying for our Ella Joy.  Like Brent Helming wrote, “Though storms of strife assail me without warning 
And though they try to steal my joy away,” I will find rest in my Precious Jesus, the Rock of my salvation.

I apologize for any confusion I have caused when I used the word ”remission.”  The nurse used the word when describing the process of checking Ella Joy’s ct scans and bone marrow extraction to check the percentage of cancer in her bone marrow.  The results from these tests will determine the next course of her chemotherapy treatments.  After the 1st ct scan, we discovered cancer had spread to her neck, arm pits, chest, abdomen, groin area and pretty much everywhere lymph nodes existed in her tiny little body.  Ella Joy is still just at the beginning of her chemotherapy and the entire treatment will be anywhere from 2 years to 2 and ½ years.

This is going to be a very long and challenging journey for our family, but we know we are not alone.  We have a faithful, sovereign, loving, amazing God who is with us through the length.  We are also so incredibly thankful to God for wonderful supportive friends who have been praying for Ella Joy and who remind us that she is being covered with storehouses of prayers.  God has brought forth many people who have supported our family & created ways for others to help our family in many different ways:

Nikki created a facebook page https://www.facebook.com/groups/389360344500046/393658547403559/?ref=notif&notif_t=group_activity and as we check it daily, we see soldiers of Christ, our friends & family who are faithfully lifting up our Ella Joy in prayer.  It is such a tremendous source of encouragement for us!  Thank you to everyone who has joined this army of prayer warriors!  We are so thankful for each and every single one of you!

Jeannie started a meal train http://www.mealtrain.com/view/?id=R2oEe9Nifsk%3d  The meals that have been delivered has been helping and continues to help our family in so many ways.  Especially after Ella Joy’s chemotherapy sessions, when I do not have time to cook because I am taking care of Ella Joy’s needs as well as Asaphie’s needs, the doorbell rings, and we are so thankful for each and every person who brings meals so that I don’t have to cook, and I can spend time on taking care of Ella Joy.  Praise the Lord for meal train!

Meredith brimere07@gmail.com had t-shirts made, and she is selling them to help with our medical costs for Ella Joy’s chemotherapy treatments and drugs.  She told me that in addition to raising money, she is excited to sell the t-shirts because as everyone wears them, her vision is for the community to come together and remember to pray for Ella Joy especially on her chemotherapy days, which are Thursdays.

I was reminded when thinking about the body of Christ that, “there are many parts, yet one body.” I Corinthians 12:20

If one member suffers, all suffer together; if one member is honored, all rejoice together. I Corinthians 12:26

We are so very thankful for these ladies who have spearheaded these things that I otherwise would not have done myself.  God used their hands and feet to help our family out and to represent the body of Christ at work.

11/7/13

Today was a long day at the hospital as we had expected.  The night before, I woke Ella Joy up to eat before midnight because I knew she would be hungry and would not be able to eat because she needed to fast for her procedures.  Like clockwork, she woke up and asked for food.  It pained me to have to tell her that she could not eat until later.  She cried and told me I was a bad mom for not giving her food when she was hungry.  In the morning, her hunger pangs were stronger, especially since she was still on prednisone (hormones) that makes her ravenously hungry and I wished I could have been the one fasting instead of her.  She kept telling us she wanted Cheetos, and I kept having to tell her we had to wait until after all the procedures were done.  Thank you so much for all your prayers, because this time around she was able to drink all the contrast and keep it down!  She did not throw up this time, and even though we had to wait a good few hours after she drank the contrast before her ct scan, bone marrow extraction and spinal tap (or lumbar puncture), things went relatively smoothly.  So thankful Mike was able to take off work and Jessica and my sister Teresa were able to come and help us out for this visit.  Mike was with Ella Joy and she was still crying when the nurses put in her IV and administered her bloodwork and chemotherapy drugs earlier in the morning.

One prayer request is for Ella Joy to be brave and as she starts to get used to the chemotherapy procedures, she would not fear, but know that God is with her and that there are so many people praying for her, and that she needs to be strong in order for her to get better.  Instead of having her fast before future spinal taps, another option we are willing to try is having her get her spinal taps on the oncology floor without anesthesia.  In order to do this, she needs to be cooperative and hold still with my help.  I am going to learn how to give her shots at home that she will need as part of the chemotherapy treatments.  I will also have to give her pills that do not dissolve, so I am praying she will be able to chew or swallow them without any problems.

This coming Thursday, Nov. 14th is going to be even longer of a day for us at the hospital.  Our nurse told us we would need to get there at 8am and expect to be there until 7pm or 8pm.  We are praying that things will go smoothly and that we will be able to work things out with help for Asaphie.

Asaph had a fever earlier in the week, and he also has been coughing with a runny nose.  100% God has been and continues to protect Ella Joy who has not yet had a fever or caught any cough or runny nose since she was on chemotherapy.  If she did have a fever, we would have to rush her to Lurie or the ER.  Please continue praying for God’s protection on her body, especially when her body gets weak, and her immune system is low.

Also, I have been putting it off for a while, but her hair is slowly but surely falling out.  In the past couple of days, I have found her hair shedding on her jammies, clothes, on the bed, and pretty much everywhere.  I try to remind her that what makes her beautiful is not her hair, but her smile, her eyes (things that will not change), and especially her heart that loves Jesus.  Thanks to a few people who have made her and myself matching hats, I am praying she will get excited about picking out a matching set of hats we can wear together for that particular day.  To be honest, if she wanted me to shave my head with her I would do it so she doesn’t feel alone in this difficult road ahead of her.

Just about a year ago, my sister found a small prayer journal I had written when I was 15 years old.  I had written prayers for the salvation of my parents, and that they would have good Taiwanese Christian friends.  I prayed for my sister(s) to become saved and to have a personal relationship with Jesus.  I prayed for my dad to stop smoking, and I prayed for several other things.  Years later, reading through that prayer journal, there was not one thing I prayed for that God did not answer.  The prayers were not always answered in the ways I wanted or expected, nonetheless, God faithfully answered them in His time and in His perfect way.  Having said that, even in the short amount of time from the first entry of my blog to now, God has already answered so many of the prayer requests that were on my heart.  I struggled with having Ella Joy take her meds and to keep it down, and we discovered that prednisone came in solutab dissolvable form, which was a huge answer to prayer, and made our lives more expensive, but a whole lot easier.  I was worried about driving to Chicago, and God gave a special conviction to Eddie to drive me and the kids on Wednesdays.  I needed help at Lurie watching over Asaphie, and God provided and is still providing wonderful people to help me out Thursday mornings.

And this is the confidence which we have before Him, that, if we ask anything according to His will, He hears us. And if we know that He hears us in whatever we ask, we know that we have the requests which we have asked from Him.  – 1 John 5:14-15

One of my favorite Bible moments comes from Esther 4:14, when Mordecai says to Esther, “Do not imagine that you in the king’s palace can escape any more than all the Jews. “For if you remain silent at this time, relief and deliverance will arise for the Jews from another place and you and your father’s house will perish. And who knows whether you have not attained royalty for such a time as this?”

 When I was in college and grad school, I found myself with a full schedule that included being a (graduate) student, TA (teacher’s assistant), student teacher, RA resident advisor, and a small group leader and officer in my church while attending Sat. morning leader’s meetings, m-f weekly 6:30am morning prayer, Tues. small group Bible studies, Wed. & Thurs. night prayer meetings, and Friday night large groups, and of course Sunday Lord’s day services.  Sometimes I look back and wondered how I managed to do it all, and I realize God empowered me to have the strength to take it one step at a time, and one day at a time.  Taking care of Ella Joy takes a lot of patience and a lot of sleepless nights, but I believe God has been stretching me and refining me for such a time as this.

as for me and my house …

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10/31/13

On the morning of Halloween, we went to Lurie for chemotherapy.   Ella Joy cried all the way from the shuttle at Ronald McDonald House to Lurie and to the 18th floor oncology.  When we got there, all the nurses and staff were dressed in Minion Halloween costumes   : ) While waiting for the preparation of her chemotherapy drugs, she turned to me and said, “mommy, I am ready for my blood work.”  I was so surprised she said it, and I told her she was my brave little girl.  Every week we are blessed with amazing people who are helping watch Asaph in the morning while Ella Joy gets her chemotherapy, and this week was no exception.

I first met Danielle at Bartlett library where I would often bring Ella Joy and Asaph for story times.  She was so loving and caring with the little girl she cared for that I thought she was her own daughter!  Later, I found out she helped out with Ella Joy’s Cubbies class in Awana.  This year, I found out Danielle won the battle with cancer that started when she was 10 years old!  All this time, I had no idea!  It really is so amazing how God brings the perfect people into our lives to help us through this very difficult time.  I loved how she understood everything that was happening to Ella Joy because she herself went through very similar experiences.

During one of our initial meetings, Dr. Morgan commented on how Ella Joy had really good veins, and that she could see them from across the room.  One of the things I really respect about Lurie is the fact that they strive to work around the child’s needs.  Most hospitals would give a child who is going through chemotherapy a port right away.  It is most likely easier for the nurses and doctors to work with, and it eliminates the continual IV pokes every week.  Lurie tries to hold off for at least a month during chemotherapy to avoid infections that might occur.  Ella Joy might very well need a port if her veins get weak, or if Dr. Morgan recommends it, but for now, I am going to see how she does without a port.  From what others have told me, getting a port heightens one’s sense of smell similar to that of a pregnant woman.  When a child has a port, they can at times taste the chemo drugs even when it is through an IV.  Also, there is always the risk of infections.  Since Ella Joy struggled so much with the taste of her drugs, I felt like it would be the better decision for Ella Joy to hold off on the port for now until they say she really needs one.

One huge prayer request is for Nov. 7th which is this coming Thursday.  This is going to be a really long doozie of a day.  We are going to go in 8am and Ella Joy will be fasting and once again, she will have to consume contrast with a good amount of clear liquid.  Even though the contrast is not supposed to taste like anything, Ella Joy struggled to drink it and keep it down the last time.  Please pray she would be able to have no problems this time around.  Before, I tried to make a game out of it having her drink to certain marked lines in half hour intervals, and when she was literally on her last few drops, I think I pushed her too hard and she threw it all up and we had to start all over again.  She will be having her ct scan, bone marrow extraction, her third spinal tap, and her chemotherapy session too.  The results from this round of procedures will determine how we will approach the next phase of chemotherapy.  I am praying to God all the cancer is melted away, and that the tests will come back with very good results.

Once again, this week, her blood counts according to her nurse are good.  We are so incredibly thankful for everyone who is praying for Ella Joy, who God gives heavy hearts to pray for our little girl daily!

“As for me and my house, we will serve the Lord.” Joshua 24:15 … Ella Joy read this stenciled verse off the family room wall.  It never occurred to me to talk about this verse with her before, but she read it and looked to me for answers.  I told her no matter what happens in life, our family is dedicated and devoted to loving and serving God.  Just like mommy and appa are married and have made a commitment before God to love one another and strive to serve God as we try to raise a family in the Lord, we are also married to Jesus and need to have a real committed relationship with Him.  I never want to be a fair-weathered Christian who only loves God when the circumstances are in my favor, or when everything is going according to my game plan.  When we say we will serve the Lord in our family, it means even when our little Ella Joy has stage 4 non-Hodgkins lymphoma cancer, we will continue to love God, we will continue to praise God, we will continue to serve God.  Circumstances will never change our allegiance to God because He never changes.  I would be a fool not to remember markers of His faithfulness to me in the past. And even now, He never fails to show us His love through so many people who are reaching out to us.  Thank you so much for your love, support, encouragement, generosity, and prayers!