Bread of Life

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10/27/13 

“Mommy, can you please make me some tofu miso soup, edamane, chicken nuggets, noodles, a sandwich, and scrambled eggs?”  I looked at the clock, it was 3:30am Sunday morning.  “Umm, okay” …. This normally would have been Ella Joy’s entire meal of the day, but every since she has started chemotherapy and taken prednisone/methylprednisolone, she has had an incredible appetite!  And let me tell you, this girl knows exactly what she wants to eat at all hours of the day!  She is gaining the most adorable pot belly you have ever seen!  If she had asked me this question before being diagnosed with stage 4 nonhodgkins lymphoma cancer, I would have told her to get out of town, hit the road, or go back to bed, we have church in the morning!  But of course I know there might be a day down the line where while on chemotherapy, she may not want to eat and she might even have trouble holding food down … so whenever she wants to eat, whether it be 3:30am in the morning, or 3:30pm at night, I will quietly and quickly get up and make it for her because I love her.  

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. Or which one of you, if his son asks him for bread, will give him a stone? Or if he asks for a fish, will give him a serpent? If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!  Matthew 7:7-11

I thought about how true it was that though I am sinful, I know how to love and take care of my children when they need me.  And the best part is HOW MUCH MORE GOD will answer our prayers!  Because JESUS (who is perfect and without sin) loves us more than any earthly parent like myself could ever love her little girl.  I am tearing as I write this because that 3:30am-get-up-and-make food-earthly love is a whole lot!  But His love is unfathomable!  Unreasonable, immeasurable and perfect in every way!  Greater love has no one than this: to lay down one’s life for one’s friends. – John 15:13  What we are now going through is a miniscule calvary compared to what Jesus did for us on the cross 2000 years ago. 

 We were extremely touched by a family who came all the way from Champaign Urbana to come visit us the other day.  They came to encourage us and though the time we had together was short, it was a great time of fellowship and catching up.  Mike will never admit it, but I saw him tearing up as he closed the door behind them as they left our home.  We were both touched by this family’s generosity, friendship and love. 

 Then Jesus declared, “I am the bread of life. Whoever comes to me will never go hungry, and whoever believes in me will never be thirsty. John 6:35

 I have always prayed for Ella Joy and Asaphie to know Jesus at a young age.  As much as she craves food while being on hormones, I pray that as she grows, she would experience, taste and crave the true Bread of Life.  So that she would be satisfied in her daily walk with God each day. 

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seasons of change

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10/23/13

Praise the Lord!  Thanks to everyone’s prayers and our amazing God who is sovereign over all things and circumstances, we found some people to help with watching Asaphie at Lurie for the next several Thursdays!  We are so thankful that he will be able to stay with us in the hospital and be close by as Ella Joy gets her chemotherapy treatments, spinal taps, ct scans, blood transfusions and other procedures on Thursdays!  The reason we wanted Asaphie to be with us and not drop him off somewhere outside of the hospital is because this will be our lives weekly for the next 6 months and then for the next 2 and a half years.  I might be borderline crazy, but ever since they were born I was always the kind of mom who never hired babysitters.  Instead, I would take them everywhere with me.  I never wanted to miss a beat with them, because before you know it, they grow up so fast and you wonder where those childhood years went?  When we were at U of I, there were so many awesome college students who house sat while Mike and I went to small group.  I was always so thankful for these students who were probably very much in need of money, but they always offered to housesit because they wanted to and because it was a way of serving God.

Not only did God provide some phenomenal people to help with watching Asaph at Lurie, but when I was praying to God for help with driving especially when the fierce winter approaches … our good friend Eddie volunteers to drive us on Wednesdays so we can stay downtown and then go straight to Lurie first thing in the morning on Thursday.  Mike and I are so incredibly thankful for so many sacrifices our friends are making to help our family out and to make our lives a little easier.

“For everything there is a season, and a time for every matter under heaven.”  Ecclesiastes 3:1

The drugs are definitely kicking in and we are seeing changes in Ella Joy’s livelihood.  She is definitely more moody and sensitive.  Please pray God would help her to be in control of her feelings and mood swings.  Also, we pray she would be brave.  Whenever we head to downtown Chicago, she asks, “What are they gonna do to me?”  She is traumatized by all the chemotherapy, needles & bloodwork, medicine, and procedures.  Mike says he noticed that her hair is thinning too.  We were so thankful someone gave us special shampoo that helps soothe the scalp for when Ella Joy’s hair falls out.  One huge prayer request is for God to protect her body from infections, germs and bacteria.  Her bottom was hurting the other night and also this morning.  I was wondering if it was from the chemo drugs, prednisone, zolfran, or powderlax (miralax)?  The good news is that we found out it was just a little irritation.  We were relieved because we knew that if it was an infection, we would have to rush her to the hospital immediately.

Before Ella Joy started chemotherapy she loved playing with Asaph.  They were best friends and did everything together.  These days, she yells out for him to leave her alone.  We need to pray for wisdom to know how to discipline Ella Joy when she acts out.  On one hand, we know the chemo drugs and steroids cause her to be extra moody and sensitive. But on the other hand, if we do not discipline her, Asaph will see how she acts and imitate her and think it is okay to act out and never get disciplined.

One huge decision we made was to have Ella Joy take dissolvable prednisone tablets versus the liquid.  I used to follow Ella Joy around the house for hours to have her take liquid prednisone.  It was tiring on Ella Joy, on me, and anyone who was watching.  When we found out they made dissolvable tablets we were so excited but even with insurance these pills are so incredibly expensive!  In the end, Mike and I agreed that it was definitely worth it to get them.

The meal train has been such a wonderful way people have served our family.  Thanks to mrsjeannielee@gmail.com who has started this up for us, we have not had to cook or eat out this entire week!  I even use the meals to pack for Mike’s lunches and it has been such a great help to our family.  So we wanted to say a huge thank you to everyone signing up for meals, and for everyone who already delivered us meals!  We are so thankful for this gesture of love and support!

When our friend Alice was making Ella Joy and me a matching hat set, she shared that when she was in the specialty yarn shop, she met some women and one of them had a daughter with cancer.  That woman gave Alice very specific advice on tips for making hats for chemo patients!  Things that she would have never thought of, like texture of yarn, breathability, comfort in stitches, etc.  She went on to say how she felt God ordained that moment.  I really do believe that God is in the details of everything!  I was so encouraged hearing about that encounter.

It was great getting to meet up again with the Cho family.  They have become our mentors and are always there for us when we have any questions or concerns.  I always want to remember to pray for Sophie that she would continue to be the brave and beautiful “feisty fighter” as she finishes her treatments.

10/24/13

After another long day of chemotherapy and being at the hospital and downtown, we took the train back home and got the kids in bed only to find out that our heater didn’t work and it just so happened that night would drop to freezing temperatures.  We knew we would need a new motor, and we knew that it wouldn’t be cheap either.  We were so thankful that we had 2 space heaters and Mike set them up in Ella Joy and Asaph’s rooms so they would not freeze overnight.  A preacher once said when you are a Christian, you are always in one of three scenarios: entering into a storm, currently in a storm, or just getting out of a storm in life.  I am not going to try to compare my life with that of Job from the Bible, but we have definitely had many storms come our way, one after another after another.  But instead of focusing on expensive problems and why so many difficult and challenging things are consuming our lives, we really pray for a heart that would focus on all the blessings He has given to us in our lives.  Amazing friends & family who pray for us and support, encourage, and love us.  I cannot emphasize enough how we covet everyone’s prayers for Ella Joy and our family.

We are so very thankful our friend Nana ordered bracelets & our friend Meredith ordered shirts for people to wear to remember to pray for Ella Joy especially on Thursdays her chemotherapy day!  We are really excited about that!

Mike’s mom said there was a woman with cancer and she prayed this Bible verse over and over again as she went through chemotherapy and eventually became cancer free…

“The Lord is my strength and my song: he has become my salvation.  Shouts of joy and victory resound in the tents of the righteous.  The Lord’s right hand has done mighty things!  I will not die but live, and will proclaim what the Lord has done.  The Lord has chastened me severely, but he has not given me over to death.”  Psalms 118:14-18

Please pray that Ella Joy would continue to love and trust Jesus throughout her fight against cancer.  That she would grow to have an extraordinary testimony of God’s healing power and love for her.  I pray that God would have amazing plans for her life, plans to prosper her and not to harm her, plans to give her hope and a future. Jeremiah 29:11

Fixing our eyes on the prize

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10/16/13

Mike once told me he was listening to WBGL and a girl lifted a 5,600 pound jeep that trapped her father underneath.  We talked about how amazing it was that she had the strength to do such a feat in an urgent moment. So … all by myself, driving my 2 kids in rush hour traffic (over 2 ½ hours) to Lurie, and then parking the van and fast-walking a double stroller in pouring rain to the Ronald McDonald House may be easy for some, but for me, it was a huge feat!  I truly believe there are armies of people praying for me, and this is how God helped me to do this.  Ella Joy needed to have another spinal tap and chemotherapy, and it was another long day at the hospital.

It never ceases to amaze me how God brings very special people into our lives that are incredible blessings to our family.  Lindsay is not only pregnant and due very soon, but she also has 2 little kids at home and could have spent the day in the comfort of her own home.  She stayed downtown overnight and came early in the morning to the hospital to help watch over Asaphie.  She stayed the entire time, and this made helping Ella Joy a thousand times easier, because she was crying and very reluctant to get her IV for chemotherapy, and then she did not want to get anesthesia for her 2nd spinal tap.  I cannot even imagine what chaos it would have been if Asaph was in the cramped little hospital room with us.  Then, when we got out to eat at Ella Joy’s favorite restaurant Red Robin, I wanted to thank her by paying for the meal, but she paid for it, and then gave us a bag of her grandma’s cookies.  She also had family connections and helped us to plan for Ella Joy getting a haircut so it is easier before her hair starts falling out.  I am not used to receiving so many blessings all at once.  I felt like she was an angel God sent to us.  Since Ella Joy had to fast, her first dose of prednisone was due, so I had her eat her favorite mac and cheese, and then I gave her 5ml of prednisone.  She was once again on her last sip, and she threw it all up.  So, when we went home, we tried again.  I said a prayer, and this time, she kept it down.

There were so many blessings God gave us … friends making matching hats for Ella Joy and myself, others bringing us food, sending care packages, a photo session with Kenny, getting to see Min, Bob, and Emily at the hospital, and simply getting encouraging messages affirming that people are praying for Ella Joy and our family.  One prayer request is that Ella Joy would continue to keep her meds down.  Every time she throws up, we have to do it all over again, and the prednisone she must take 2X a day no matter what.  I feel terrible I have to threaten her by saying she has to get a tubie down her nose, but it really is the truth if she cannot keep it down.

The nurse called me and told me that Ella Joy’s blood count was surprisingly good!  No transfusion was necessary for this week.  Earlier, she had told us that Ella Joy would most likely be needing a blood transfusion and that most of her non-hodgkin’s lymphoma cancer patients’ blood counts lowered significantly and that she predicted Ella Joy would be needing one this week.  To a non-Christian, this news might seem surprising or confusing, but for us, we have prayer warriors praying with us, and God is guarding her heart and entire body as well as every blood cell in her being.  After all, He (Psalm 139:13) knit her together and knows her inmost being.  No doubt her immune system will lower and she will need blood transfusions in the future, but for now, we have no doubt God is listening to the prayers of His people who love Ella Joy and are crying out for her.

One Bible verse I was thinking about recently was Matthew 25:23 “His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!”  Just got a call from Meredith, Ella Joy’s Awana director, and as she was sharing with me about her ideas to make shirts so people can remember to pray for Ella Joy and wear them on Thursdays (her chemo day), and how she was using her connections to help Ella Joy in every way possible, I couldn’t help but think of how she was using the talents and gifts God had given her to multiply the blessings a thousand times over.  And then she shares about her neighbor and how she has been trying to minister to her neighbor so they could see the love of Christ.  When she shared Ella Joy’s story with her neighbor, and they were crying and weeping together, you cannot help but see God’s hand at work.  May God be glorified through all of this.  Even though it is so very painful to see Ella joy throwing up her meds, and crying when she gets her IV and chemotherapy, and even though it has been hard sleeping at night, wondering if she needs to be rushed to the hospital … just like the song, blessed be the name of the Lord though there is pain in the offering…

A friend once asked me if I was angry at God or if I at all doubted God.  The answer was best said  … Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life.”  Sometimes I wonder if there was another way when I prayed every day to God that He would bless Ella Joy and Asaph and give them character and integrity in their hearts.  That they would know and love Him at a young age.  But God has a plan for their lives, and is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us – Ephesians 3:20

One specific prayer request we have is having someone to help watch over Asaph in the hospital.  From 8:30am/9am to 11am, sometimes noon (depending on the procedures, sometimes just chemotherapy, sometimes chemo and spinal tap), we need help.  There are volunteers in the hospital who help with games and crafts, but to change his diaper when needed or just to watch over him as he plays … that is needful for us.  The first few times we were in the hospital for over 7 hours a day, I neglected him and spent all my time at Ella Joy’s side.  Asaph had the worst diaper rash because I didn’t take time out to care for him.  I felt so bad, and I realized I cannot do this on my own, and I need help.  So, if you know anyone who lives in downtown Chicago, or is able to come to Lurie on Thursday mornings around 8:30am, please let me know!

Pressing on …

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10/10/13, Thursday we got up early to got to Lurie.  Ella Joy was crying that she wanted me to stop the car.  She said her forehead hurt.  I felt so hopeless because I was driving and I couldn’t do anything to comfort her.  She was so upset that she threw up.  It took a little over 2 and a half hours to get to Lurie, and when we got there, Ella Joy started her Chemotherapy right away.  It broke my heart to see her crying as they gave her vincristine (destroys cancer cells), & daunorubicin (red liquid). Then, we had to give her prednisone (hormones) and allopurinol (white liquid), which she threw up 2 times.  The nurse had to tell her that if she didn’t get the drugs down, she would have to stay at the hospital and get a tubie in her nose.  She eventually kept it down.   I noticed right away how the chemo drugs were affecting her.  She kept having to lay her head down, she was tired and complained about her neck and forehead hurting.  That night, we had to give her oral drugs again.  She was almost done with it, and then when she was sipping the last drops, she threw up again.  We had to start the meds all over again.  Ella Joy cried and pleaded with us that she was tired and didn’t want anymore drugs.  We were relieved she finally got it down her system.  Before she went to bed, she wanted me to read her some books.  She picked out a few, and wanted me to read her “Love you Forever” by Robert N. Munsch.   I told her I didn’t want to read it because it always makes me cry.  She insisted, and I could not stop crying as I read the book to her.

When we woke up in the morning, she was singing, “My God is so big, so strong and so mighty, there’s nothing my God cannot do!” and then “John 3:16 says that God so loves the world, he gave his only begotten son, that whoever believes in him should never die, but have eternal life!”  Even though she had such a tough night at the hospital, she woke up singing praises to Jesus!  I felt so thankful, because this was the Ella Joy we remembered!  We had to do lab work, so we went in, and once again, the needle made Ella Joy cry.  All the poking, meds, tests, and labs were wearing on her.  Ella Joy asked me why she needed to take all these medications and why we had to be in the hospital.  It was then we talked about the word, “cancer” and how the lumps she had were called cancer.  After talking with a child life specialist, she seemed to take her oral meds much better.  “Praise God!”  We will have to go back Monday for peg-asparaginase (IV infusion), so we are praying that she will not have any allergic reactions.  Please pray that Ella Joy will continue to take her meds and keep them down.  In about a month, she will be getting a port, but for now, she is getting shots and taking oral medication for her chemotherapy.  She is only 4 years old, and her little body as been taking a beating as we see the drugs killing her good and bad cells.  Being in the 4th stage of cancer, where the t-cells have spread just about everywhere in her body, the only hope we have is that she takes well & her body reacts well to the chemotherapy treatment.  We want to thank all our friends and family who have been reaching out to us, praying alongside us, and crying out to God on behalf of us.  We 100% believe in the power of prayer and that God hears every single prayer lifted up for Ella Joy.  We know this is going to be a very difficult few years ahead of us, but we know we have a God who is faithful and loves Ella Joy even more than we do.

10/14/13 Monday was the peg-asparaginase (IV infusion) day.  Ella Joy was terrified of getting more blood work done.  She was crying and reluctant to go into the room.  I asked our nurse to get the child life specialist.  She said she would, but when 20 minutes passed by, I asked again if the child like specialist was coming?  The nurse said there was no rush and that we had time.  I was so confused because my daughter was crying hysterically, and all the while, I thought the child life specialist was on her way.  We ended up getting a really awesome nurse to come in and help Ella Joy and the child life specialist came with her i pad and games to calm Ella Joy down.  Mike’s parents were with us, so it was nice to have some help with Asaph.  So thankful to find out Ella Joy is not allergic to peg-asparaginase.  I was really worried about Ella Joy because she did not take a nap the other day because she was “playing” when she should have been resting, and today was a long and crazy day at the hospital.  As much as possible, we want Ella Joy to be able to go to Awana, Poplar Creek story time, and small group Bible study because these are the events she looks forward to all week.  Mike called me and we were both in tears as he told me that Ella Joy’s director of Cubbies had someone make absolutely adorable matching hats for Ella Joy and myself to wear.  She also made red and blue hats for all the cubbies to wear.  This touched our hearts and we really saw the church and Awana leaders coming together to support Ella Joy as much as possible.  God really used her Awana director, teachers, leaders, helpers, and old leaders to show Christ’s love to our family.

In the beginning …

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It all started when I was tickling Ella Joy’s leg, and I noticed a lump. When our pediatrician saw it, he noticed one enormous lymph node in her groin area along with several smaller ones. He said since her livelihood is good, and her bloodwork was normal, to wait it out for another few weeks. It turned out that her lymph nodes grew, and we were referred to a pediatric surgeon. He advised us to wait another 3 weeks to see if the lymph nodes would go down on their own. He said 9 out of 10 cases turn out benign. So, we waited, but when we came back for a follow-up, we saw another pediatric surgeon, and together we agreed she needed to have a biospy of the entire enlarged lymph node. God orchestrated everything perfectly. The surgery got moved up an hour earlier, but everything turned out. We were so thankful our pastor came to pray for her right in the nick of time. And we were also grateful to my sister who watched over Asaph who was not allowed in the recovery room. She went under for anesthesia, and the surgery went very smoothly. However, waking up in recovery from anesthesia was a very different story. She was crying and trying to stand up. It was very challenging for Mike and I to stop her from thrashing around. The nurse gave her some pain medication so she would calm down and not hurt herself. The nurse was just about to give her stronger medicine, and then she fell asleep. After 2 hours in recovery, she was ready to go home. When we asked if she needed some pain medication, she said “no thanks” and started limping about the house. She was sad she could not do strenuous activities around the house, but she loved reading her books, and she pretended she was a teacher and performed story time for Asaphie and myself. She read books, and in between had some action songs and passed out sticks to us to dance with for the “freeze song.”

Her surgery was on a Wednesday, and we were supposed to get the results from the biopsy on Monday, but the next day I was resting on the couch after putting the kids down for a nap. I was surprised to see Mike home from work. He told me to sit up, sat down next to me, and told me that the results came back positive for non-hodgkins t-cell lymphoma cancer. I was in shock and could not believe it. My heart felt like it was pierced 100 times over. We embraced each other and cried together, but Ella Joy woke up soon after and we had to pull it together. I tried to keep Ella Joy and Asaphie busy playing with magna tiles and blocks while we made phone calls and prepared for a very difficult road ahead for us. That night I did not sleep. I was praying all night to God, weeping, and asking Him to protect Ella Joy. When her body is weak from the chemotherapy, that she would not be discouraged. When her hair falls out, God would remind her that her inner character is what truly makes her beautiful. One time, I was telling her the story of snow white and I put in her name instead of snow white. I came to the part where the mirror said that Ella Joy Sun Young of the May May’s was the most beautiful, and the queen was angry and sent for the woodsman to get rid of Ella Joy, but she was too … and Ella Joy said, “I know, the woodsman felt sorry for Ella Joy because she was poor and had a lump.” It broke my heart to hear her say that. It must be so confusing for Ella Joy to see her appa and mommy crying and praying, and just trying to pull it together.

The next day, we had no time to spare, we made appointments with 2 oncologists and we talked with a 3rd. After talking with a family who shared valuable insights from their past experiences with her their daughter, we decided to go with Lurie AKA Children’s Memorial. This poses another challenge because for the most part, I (Anne) will be the one to drive her for her chemotherapy appointments, and everyone who knows me knows that I am extremely terrified of driving in downtown Chicago for one and a half to 2 hours. I actually have no idea what to do when the fierce winter comes. So I need stored prayers that God would help me to drive back and forth safely so we can get Ella Joy to her Chemotherapy treatments. We knew before we could figure out staging and the road map, Ella Joy would need to undergo a bone marrow sample, a ct scan, and a spinal tap, and possibly a pet scan. After hearing our Ella Joy had cancer, the only place to go in on my knees. We were so incredibly thankful for the army of prayer warriors, our friends who joined us on our knees in prayer. Supporting us, loving us, and interceding for us. We are going to need all these storehouses of prayers for the tough and challenging times ahead of us. Even when we were going from hospital to hospital, God provided friends and family to watch over Asaph and Ella Joy. We know that it might be another challenge to find people to help watch over Asaphie, but with my sister and friends, we know God will continue to provide when we need it. We were incredibly thankful for a dedicated prayer warrior who made it a point to come down with two of our close college friends to share with us and pray with us and for Ella Joy and Asaph. She said when she heard that Ella Joy had cancer, she couldn’t sleep and she was crying thinking about the tears we shed & the pain we were feeling. That night we went to a revivial meeting because we knew we needed God’s word and prayer to refuel us for the valleys ahead. Ella Joy is already seeing the body of Christ at work, a basket of cookies sent for her, a bag of food at our door, and most of all prayers from family and friends that are being lifted up to God as incense rising. A friend brought her a rainbow loom, and Ella Joy said that she knows she has 2 jobs in her life: 1.) to help people when they are hurt, and 2.) to make bracelets with her rainbow loom.

The next day two days were all day in the hospital.  The first day, we went to St. Alexius and delivered the slides, path report and block (they normally do not release, but they made an exception) to Lurie.  We talked with our oncologist Dr. Morgan, and a child life specialist brought out a chemo doll and tired to explain what would be happening to Ella Joy the next day.

The next day, we went in early, and started with having Ella Joy drink contrast (which dyes her insides for the ct scan).  She was almost finished with it, and then she vomited it all out.  So, we started again and it was very difficult for her to drink again.  In fact, she did not drink it.  For the echo, she was calm at first, but then she started to cry out that she wanted to go home.  She was over tired, and didn’t want to be in the hospital anymore.  She eventually fell asleep and they finished the echo.  Next, she needed to once again put on the gas mask, but she was reluctant because she remembered her bad experience with it when she woke up from recovery when she had her surgery.  It was hard to see her crying, but once she went under, she had a spinal tap, bone marrow extraction, and ct scan.  This would be her first chemotherapy in her spine, and they gave her a dose of zyloprim which we were thankful she took well to.  We will be giving this to her for the next week 2X a day with Zofran available if she needs it.

Dr. Morgan was honest with us and let us know Ella Joy’s cancer has spread and cancer is in her bone marrow.  She is in the 4th stage of cancer.  The cancer has spread to her groin, neck, chest, abdomen, and armpits, and bone marrow.  This devastated us, as we realized she is in a very critical stage and that her survival rate is a lot lower than we had expected.  We are also in the process of contemplating whether we want her to be involved with clinical studies.  Please pray God would give us wisdom as we make these decisions.  We ask you to continue praying with us for Ella Joy to be strong and take well to the chemotherapy as that will help determine her likelihood to fight this cancer.  We thank you in advance for your faithful prayers as we pray, fight, and cry together for Ella Joy.