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!