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.

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20 thoughts on “Pressing on …

  1. Anne, I am completely heartbroken for your entire family. Ella Joy is fortunate to have parents who are so dedicated to getting her the best care. It’s amazing what you will do for your child…driving in downtown Chicago will become no big deal, and your knowledge of exactly what she needs from doctors and family/friends will become even stronger. Keeping you guys in my thoughts, looking forward to the day you can announce she is cancer free!

  2. I have been on all of those yucky drugs! They are so hard. I used to sneak out of my hospital room to avoid them Zofran is a lifesaver and prevented me from throwing up my chemo almost every day. Keep pressing on!! Things will get easier, I promise. Especially with the port! Praying, praying, praying. Keep singing sweet Ella Joy!

  3. So sorry to hear about the rough chemo for Ella Joy. My family has been through lymphoma 4 times so I understand how taxing it can be. Glad to hear she is still keeping her joy even during this rough time. Let her know that Miss Frances her Cubbie leader is praying for her!

  4. Dear Michael, Anne, Asaph and Ella Joy,
    My heart breaks and I cry for you as I read your entry. I am joining you and everyone else in prayers to bring healing, comfort, peace, and hope. I am so proud of Ella Joy for taking it such difficulty procedure well, and I hope I had met her.

  5. Dear Michael, Anne, Asaph and Ella Joy,
    My heart breaks and I cry for you as I read your entry. I am joining you and everyone else in prayers to bring healing, comfort, peace, and hope. I am so proud of Ella Joy for taking such difficult procedure well, and I hope I had met her.

  6. praying for Ella joy and your family. I know Mike from arumdaun church in ny and actually now I am an adult hematologist/ oncologist.

  7. I met Ella Joy at VBS and is she ever an adorable JOY! My heart aches for her and your family and I along with my 3 little boys are praying for you all every day. Your faith and strength are an inspiration!

  8. My family and I are praying for Ella Joy. My son has been going to Lurie since birth and underwent a bone marrow transplant that failed last year. I am not sure if the nurses have used the J-tip on Ella Joy before they start her IV but the J-tip really helps numb the area to be poked. And one of the most difficult parts of transplant were the horrible tasting oral meds. If you could have her practice swallowing some tic tacs- she may be able to get those drugs in pill form. Otherwise, we used to mix it with chocolate syrup or ice cream and we always followed up with a jolly rancher-that helped a little too. I am so sorry that your family is on this very tough journey.

  9. I met Mike, Frank, and Grace at Hanmee when I was in junior high… about 20 years ago! I look forward to Ella’s recovery and will keep faith that this experience will teach her strength, perseverence, and a joy for life that no one could match. I also pray that your wonderful son will understand (the best he could, at least!) to be extra nice to Ella and not be envious of the attention and support she gets. I know you all have some tough days ahead of you. Keep strong, keep together, keep praying. God bless.

  10. We haven’t met, but I want you to know I am praying for your sweet daughter, too. I attend Village Church of Bartlett ad I know that you are being lifted up by many many people there. All Glory to God and healing for your Ella Joy from our almighty Savior who performs miracles!

  11. Praying for Ella Joy – also met her at Harvest VBS and was a counselor for the purple team. Praying for healing in Jesus’ name. Amen!

  12. My husband and two boys will be praying for Ella Joy and your family during our prayer times. Jesus is our healer & comforter…your faith is strong…nothing is impossible for God!

  13. My son is in Cubbies with Ella Joy. I was heartbroken to hear this news and shed tears while reading your account of these traumatic experiences that you have to go through during this time. So thankful that God holds us in His hands. Praying for your family every day. (and I cry whenever I read that book too…I can’t imagine how hard it is at this time.)

  14. Anne & Mike – I don’t have the pleasure of knowing your family, but do know that Ella Joy and your whole family are in my prayers!!! God is good and I pray that He continues to heal Ella Joy, and also give your family the strength and peace during this heart breaking time. Please know that you are not alone!!! Our Father is always by your side!!! In Christ, Carmen Kim

  15. Hi Anne,
    It’s been a long time since we’ve talked or seen each other, but I’ll be praying for Ella Joy and your family! May God give Ella Joy strength, joy, and courage in this overwhelming time. Praying for your peace, strength, and perseverance and for God to touch Ella Joy with complete cleansing.
    Prayers and hugs,
    Christie Ahn
    ~~~~~~~~~~~
    Psalm 57:2 “I cry out to God Most High, to God who will fulfill His purpose for me.”

  16. I came to your story via Kenny’s photo blog, and am in tears. You mentioned the 2 hour drive to Lurie. My husband is on the board of Compass to Care, an organization that assists families with travel costs for children who must travel to oncologists. I just wanted to share in case they could be of assistance. http://www.compasstocare.org/

  17. Hi – I don’t think we’ve met, but I’ve been reading your blog. I’m not sure if it would help, but we live in Chicago not far from Lurie’s. If you need a place of refuge before or after driving into the city you’re welcome to stop at our place, especially if you want to avoid rush hour traffic. We have lots of free parking nearby and we’re close to the highway, and our 3 year old would be happy to share his toys with Ella Joy.

    Either way you have my family’s prayers.

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