Christ is Enough for me!

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1/26/14

We cannot thank you enough for your prayers everyone!  Friday night, we had a great Bible study on growing through trials, James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.”  When we were getting ready to put the kids down for the night, I noticed that Ella Joy felt warm.  We took her temperature, and sure enough, it was 102.4.  We immediately made some phone calls and packed our bags.  Once again, there was room for us at RMH!  Praise the Lord!  Something we found out is that Asaph is not allowed at all at Luries!  This made transitions a lot more challenging as Mike and I took turns watching Ella Joy and Asaphie.  Ella Joy had RSV a respiratory virus which is basically the common cold.  But for Ella Joy, it was a lot more serious because she had low white blood cell counts.  She also received a blood transfusion over night.  We got discharged a lot later than we were hoping for on Sunday, but are so very thankful to now be home!

We will be going back downtown this Wednesday, the 29th.  On 30th, please continue praying for Ella Joy to be able to lay still for the CT scan.  We are praying God would enable her to be calm for the CT scan without anesthesia.  She will also be getting a spinal tap and bone marrow extraction.  Because she now has an allergic reaction to peg asparaginase, Ella Joy needs to be inpatient more frequently and for longer periods of time.  The one time the nurses poked her 4X for an IV, there was blanching, and it ended up hurting her left hand to the point that we had to give her pain medication for a period of time.  However, it may have masked the fever she had, so we praise God we were able to act quickly once we found out she had a fever.  We had debated between a picc line and a port, and in the end, we felt a port would be better for her.  When we had first explained to her what a port was, she told us, “I think I will want it later, but just not for now.”  Then, more recently we were walking around at Wal-mart and she was talking about the cake she wanted for her birthday and all these elaborate birthday details, and then out of nowhere she said, “and mommy, I also want a port.”  But then later, she told me she was scared to get a port.  I asked her why and she said, “because I do not want to get an infection!”  and then she went on to say, “and Mommy, I am not sure you know how to keep it clean!”  Please pray for Ella Joy and that things would go smoothly during surgery and even after she gets the port, please pray she would not get any infections or blood clots.  Another reason we are praying that Ella Joy does not need anesthesia for the CT scan the day before, is that for the port surgery, she will definitely be receiving anesthesia.  So, if she ends up needing it on the 30th for the ct scan, and also the next day for the port surgery, then it will be 2 days back to back of anesthesia.  So, please pray with us that God would help her to be comforted and He would enable her to be still for the scans.  Please pray they would come back to us with the good news that her lymph nodes are under one cm, and that there are zero cancer cells in her little body!  The surgery for the port is on Friday the 31st, and this is also the day we start the high dose methotrexate.  Please pray her blood levels will be high enough for her to not only get the surgery, but also the chemotherapy.  HD MTX is highly toxic, and we will be inpatient until they are able to get her levels safe and stable.  We are praying we will be able to be discharged by Sunday, but our nurse warned us it could take a lot longer depending on how her body reacts.

It really means the world to us that you are reading this blog and praying with us through this long journey.  Just like in Paul Bunyan’s Pilgrims Progress, there is value in community and togetherness.  And I truly feel that we are all in this together as there are so many of our friends and family supporting us, encouraging us, praying with us, fighting with us, and crying out with us for Ella Joy!

I would like to leave you with this video of Ella Joy singing “Christ is Enough.”  It was taken earlier the same day she went to the ER for her fever.  When we were sleeping together in her hospital room, she looked at me and asked two questions.  First she asked that when she was done with all her chemotherapy treatment, if she could have a big party for everyone on the oncology floor 18.  She went on to tell me all the foods she wanted to order to celebrate finishing her treatment.  I agreed with her, I just wanted her to get some sleep!  Then she asked, “Mama, how does God know my voice?”  I wasn’t quite sure how to answer it, so I just said, “Ella Joy God knows everything about you!  He knows how many hairs are on your head, he knows your voice, what goes on inside your mind and heart, and so much more!”  She paused as she thought about it, and then went right back to sleep.  Christ was enough for her!  She didn’t need any more explanations or reasons why … Christ is enough!

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my one defense, my righteousness, oh God, how I need You!

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 1/16/14

First of all, we would like to thank you for praying for Ella Joy and our family today!  We always appreciate it when you let us know you are interceding for us!  Today at Luries, there were no problems with the nurse getting Ella Joy’s blood to find out her counts. Praise the Lord!  At 10.4 she did not need a transfusion this week.  A great thank you is in store to my long time wonderful friend Eliza Cho who was our first two-timer (to watch Asaphie that is!) so thankful Auntie Ellie stayed the entire day with us and loved on Ella Joy and Asaph!  Also thank you to the Yu’s who visited us at RMH!  Ella Joy and Asaph enjoyed the fruit, especially the strawberries which Ella Joy ate the entire container of in a half an hour!

Next week, we are not scheduled to go downtown for chemotherapy, however, there were two big changes that we were not prepared for:  The first was that since Ella Joy was allergic to the pegaspargase, she now needs the alternative chemotherapy called Erwinia asparaginase.  This changes the schedule because we will need to come into clinic more frequently, and I am praying she will not have an allergic reaction to this alternative chemotherapy.  Furthermore, because of all these changes, in addition to coming in on Jan. 30th for the spinal tap, ct scan, and bone marrow extraction, she will also be admitted inpatient on Jan. 31st possibly through Feb. 6th as she gets the high dose methotrexate chemotherapy (IV over 24 hours with leucovorin 42 hours after until she is non-toxic).  This long inpatient stay for the HD methotrexate will happen again for the weeks following Feb 13th, Feb 27th, and Mar.13th.  The second change is that we will no longer be allowed to bring Asaph with us to Luries when Ella Joy is inpatient.  This poses a huge challenge for us as I always bring him along.  I have a lot of prayer requests for the long stay we will have starting on Jan. 30th.  Please pray that Ella Joy will be able to lay still for the CT scan, and that she would be able to drink and hold her contrast down without throwing up.  We are also praying there would be zero cancer cells, and that her lymph nodes would measure under one cm.  Please pray that I would be able to find the help I need to watch over Asaph for the long inpatient stays when Ella Joy is getting HD MTX (methotrexate).  Ella Joy will also be getting vincristine on the 31st, so it will be a very long inpatient stay for her with lots of pokes, chemo drugs, sitting and lying in bed.  Please pray for Mike and myself.  It was a lot of changes to consider and plan out in one day!  But we are not discouraged!  We have such amazing friends who have committed to pray for us, and who have made huge sacrifices to help us in this very time of need!  Times like this I have no time to be anxious or worry, but rather, I need to reflect on Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  Instead, I really need to focus on the verse right before it, Matthew 6:33, “But seek first His kingdom and His righteousness, and all these things will be added to you.  Another verse that is currently on my heart comes from Matthew 6:25  “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?”  I am not going to lie, it was extremely overwhelming to hear that we would have four weeks of long inpatient stays and that we would not be able to keep Asaph with us at Luries.  However, instead of worrying about all these changes… today, I will commit to celebrating Ella Joy’s life.  Celebrating another day to enjoy her, and to thank God for her smile, for her laugh, and for her heart for Jesus.  (the things I remind her that I love about her when she is sad her hair is falling out)

The other day, I heard her singing in her room over and over again, “ Lord, I need You, oh, I need You, every hour I need You, my one defense, my righteousness, oh God, how I need You!”

Amen!  Truly!  So be it!  When she is weak from the chemotherapy, when she is suffering the side effects from all the drugs, when she is crying because of needles and pokes, when she is tired of being in the hospital all day every week, and when she is feeling sick and weary, may Jesus be her one defense.  Oh how Ella Joy needs Him!  And how appropriate that Ella Joy was singing such a hymn inspired song that Matt Maher describes best by CS Lewis’ “need love” that you never grow out of and comes out of your hour of need.  My prayer is that she will continue to sing this song through this storm called cancer in her life, and that she will continue to sing it when she is in remission, and when she graduates from college, when she gets married, and again and again throughout all stages in her life…  And all the people said Amen!     

Fear Not … I have called you by name…you are mine

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1/11/14

We really needed and appreciated all your prayers this week!  This Thursday was supposed to be another week of chemotherapy peg asparaginase, but it ended up being an over night in-patient stay at the hospital.  That morning, Ella Joy was nauseous and she threw up before we got to Luries.  It was also an especially difficult start to the day because it took four different pokes for Ella Joy to get her IV working properly.  Then, when she got her peg asparaginase, something happened when the pharmacy spiked the tubing and her peg asparaginase chemo drug was leaking on the floor!  Shortly after, Ella Joy started to throw up, and then hives quickly spread all over her face, chest, back, legs, and all over her body!  She got doses of Benadryl, Epi, and an IV form of prednisone called solumedrol.  The hives came back on the right side of her face, and she got more meds later that night.  A huge thank you is in store to Becky who made a lot of sacrifices to come and help out with Asaphie!  And thank you to Angela and LJ who lovingly brought food for our family at the hospital on such a challenging day for us.

Please continue to pray for Ella Joy as her CT scan is on the 30th.  This will be the first time we will try having Ella Joy lie still without undergoing anesthesia.  Please pray that God would comfort her and she would be able to lie still so she doesn’t have to go through anesthesia and more hours of waiting before the CT scan.  One answer to prayer was my concern about her nutrition. Ella Joy has been asking for lots of bananas, strawberries, apples, pineapples, and cutie oranges, so I just make sure to wash everything fresh really thoroughly!  It is sometimes tough to know if she is low on her counts, but since we are giving her blood transfusions weekly when she needs it, she has been doing really well, so I feel better about giving her the clean fruit and veggies that she wants and craves.  Another prayer request that has been heavy on my heart is that although Ella Joy looks happy and cheerful when she is at church or around other people, there are some nights she wakes up crying uncontrollably, and she is unable to tell us why.  It sometimes takes her an entire hour to get herself together before she can even say an intelligible word, and when we ask her why she is crying, she always says she doesn’t know why.  Please pray that God would continue to guard her heart, mind, soul, and body.  Her 4 year old body is going through such drastic changes, getting blasted with chemotherapy, pills, pokes, and meds every single week, and the cry that sinks my heart every time is the one I hear when she sees me ready to give her a shot at home with my blue chemo gloves on and the syringe in my hand.

Whenever we are either on our way to the hospital, or waiting at the hospital in the waiting room, Ella Joy always whispers in fear to me that she is scared.  Please pray for Ella Joy, that He would continue to protect her and to be her Great Help in times she is scared and fearful.    One of my favorite verses that always comforted me when I was younger…  “Fear not, for I have redeemed you; I have called you by name, you are mine.
 When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
 when you walk through fire you shall not be burned, and the flame shall not consume you.
 For I am the LORD your God, the Holy One of Israel, your Savior.”  Isaiah 43:1-3

My favorite part of this verse is when God claims us as His own, and my prayer is that during the tough times, Ella Joy would hear His still small voice saying, “Fear not Ella Joy” … “you are mine,” and “I will be with you.”

We appreciate all your encouragements, love, and prayer!  Thank you so much for taking time out of your day to lift up prayers for Ella Joy!  Please never stop praying!

Bless the Lord, oh my soul, and all that is within me

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1/2/14

We are so incredibly thankful for the network of support we have from friends and family who are constantly praying for our Ella Joy as we have Chemotherapy every Thursday.  It was another long day at the hospital as Ella Joy got her chemotherapy as well as another blood transfusion.  She was not quite due yet, but since next week was already going to be long (with the Asparaginase), they decided to give her a smaller bag to transfuse.  But, I was not alone, thanks to Sharon who took time out of her winter break to help watch over Asaphie.  Please pray for Ella Joy.  Last week as well as this week, it was tough getting her IV to work properly.  Even after the nurses gave her an IV, they still needed to poke & squeeze her finger to get the tubes of  blood for her counts.  Ella Joy still cries hysterically right before she gets poked, and the fact that they had to poke her several times to get the IV working was very difficult on her.  Please pray God would protect her veins so it will be easier for the nurses to work with her IV.  Please pray Ella Joy would feel God’s comfort as she gets poked each week.  We are going to have another CT scan coming up and I need your help to pray that her lymph nodes go back to their normal size under 1 cm.  The results from her last CT scan showed that her lymph nodes had not gotten down to under 1 cm in several areas.  Also, please pray for me as I continue to give Ella Joy Ara C shots.  The last time I administered the shot to Ella Joy, I held the syringe the wrong way, and I accidentally squirted chemotherapy drug liquid on Mike’s face and arm (who was holding Ella Joy on his lap) as well as Ella Joy’s arm.  Needless to say, I was terrified that I made such a dangerous mistake!  Please pray that I would have deft hands and wisdom when I give her chemotherapy Ara C shots at home, as well as when I crush her 6mp pills and mix her drugs with liquids, giving her bactrim on the weekends, and giving her other chemotherapy drugs on a daily basis.  Usually Mike has been there for the longer days when Ella Joy has her blood transfusions, but since today was his first day back to work from break, I was by myself in watching the kids during Ella Joy’s 5-hour transfusion.  One must be creative and resourceful when in a small hospital room from morning to night, so I made an extra 2 beds out of 4 chairs, and asked the nurses for extra sheets and pillows.  And of course they did not sleep a wink, however, I was happy to see them holding hands in their failed attempt to sleep:

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God never ever fails to give us blessings after blessings.  Right after Ella Joy’s transfusion was over, we got a wonderful surprise visit from the Kim family!  Also, when we were downtown, Mike mentioned on several occasions how he needed to clear the snow that had accumulated on our driveway before it froze over in the morning.  When we got back home, our neighbors the Belzey family had already shoveled the driveway for us while we were at the hospital!  Not to mention so many genuine friends who have shown our family extreme generosity and support and who have gone out of their way to show us true examples of Christ’s love.  We are blown away by the way God is showering us with such encouragement, love, and prayer for Ella Joy.

Something I read and that encouraged me:

What cancer cannot do … cancer is so limited.  Yet in all these things It cannot cripple love.  It cannot alter hope. We are more than conquerors through Him who loved us It cannot corrode faith.  It cannot destroy peace. For I am persuaded, that neither death, nor life …It cannot kill friendship.  It cannot suppress memories.  Nor principalities nor powers, nor things present, not things to come, nor height, nor depth, not any created things It cannot silence courage.  It cannot invade the soul. Shall be able to separate is from the love of God. It cannot steal eternal life.  It cannot conquer the Spirit which is in Jesus Christ our Lord.  Romans 8:37-39

God is all-powerful, almighty, and simply amazing, and where cancer is limited, our God is endless in His glory, power, and love.

When the nurse was injecting Ella Joy’s IV with chemotherapy drugs, Ella Joy kept whimpering that she was scared, and she started crying.  Asaph immediately pressed his hands together, got on his knees, and started praying out loud to Jesus to help Ella Joy.  The nurse thought it was adorable, but every prayer counts!  Even if after reading this blog you feel convicted to lift up a prayer for our Ella Joy, please let the spirit lead you into prayer.  We covet all your prayers and are shamelessly asking you to continue to partner with us in prayer for Ella Joy.  In everything, may His name be glorified through Ella Joy’s battle against cancer.  One really simple song that I really love comes from Psalm 103:1, “ Bless the Lord, O my soul: and all that is within me, bless his holy name.”  Sometimes when I am really tired from being in the hospital long hours, and all that is within me includes feeling weary hearted, it always helps to take my mind off myself and to gaze at the cross and sing this praise song to Jesus.

(I will) bless the Lord.

Oh my soul.

And all that is within me, bless His holy name

Bless His holy name.