Day + 42
Thank you so much for your prayers when we rushed Ella Joy to the ER Friday night. Ella Joy felt nauseous and threw up in the ER. It was late, and they felt her lungs sounded congested, so they woke her up to take a chest x-ray. The np told me that Ella Joy had 2 boluses, and if she needed a third she would be sent to the ICU. I had no idea what she was talking about since she had one bolus of fluids at the er, and just some fluids during her upper endoscopy and flex sig earlier that day. She gave me wrong information and freaked me out when I was already anxious about Ella Joy’s fever that had been rising. Then, when they drew labs, her hematocrit dropped from 28 to 16. They were freaking out that it was so low so quickly, and they redrew her labs to see her hematocrit was actually 25. She would later get a blood transfusion while inpatient, but this set us back so we were not able to get a room to be admitted until closer to 1am in the morning.
Since it was the weekend, there was no pt or ot, and Ella Joy was mostly bed bound. She was already so tired from the lengthy night in the ER, and slept for the majority of our 48 hours inpatient. This concerned me since her last OT appointment, the therapist told me that Ella Joy is noticeably weaker and not as strong as she was pre bmt. She will need weekly OT/PT to regain her strength. Please pray that she would be able to do her stretches, exercises, and strive to be more active so she can achieve this goal.
The pathology report from the upper endoscopy and flex sig are not in yet, but due to the initial images from the camera, it looks like Ella Joy suffers from tummy pains and nausea indeed due to graft versus host disease. Asaph’s cells are attacking Ella Joy’s cells. We will need to add to our repertoire of meds prednisolone, omeprazole, beclomethasone, and budesonide. Please pray for God to protect Ella Joy while she is on these steroids. For the extended times Ella Joy took Prednisone the first time she went through chemotherapy, her legs several times were in so much pain that she could not walk for extended lengths of time. There were times she was wheelchair bound while taking prednisone. Please pray that the steroids would work immediately so we can slowly wean her off these hormones.
The BMT team is not sure what caused her fever. It could be a variety of causes: the procedures she had earlier that day the upper endoscopy and the flex sig (where her tummy was in major pain), GVHD, or the fact that I cut her big toe nail too deep when clipping her ingrown toenail, and it turned red and irritated. (we are needing to soak her toe in Epsom salt 3X a day). Please pray that from this point on, she would not get fevers. Especially when Mike is on his work trip coming up at the end of this month.
When we were getting discharged Sunday night, they forgot to give Ella Joy IV fluids with magnesium, so I had to prepare it at home and wait 4 hours to heplock her line. Ella Joy threw up her meds right before discharge, and by the time we re-administered the meds to her, it was closer to 10pm. I started her fluids at 11am, and didn’t get to heplock her until 2am. Then, we had to wake up at 6am to go to labs and clinic at SCCA. While we were waiting, she threw up all over herself.
By the time we were done with clinic and labs at SCCA, we shuttled back to SCH to the pharmacy. Prednisolone can cause insomnia, so we wanted to give her the hormones as soon as possible. Unfortunately, the meds were not ready and we had to wait an hour before we could pick them up. Please pray for me as I administer these meds to her. There are 17 meds I need to give her daily in the morning, and then again at night, and some meds like beclomethasone, I need to give her 4X a day! It is a lot to remember, and furthermore I need to be prepared with the tools to set her up for success. For example, for the beclomethasone, Ella joy likes this oily med with mango calpico. For the budesonide, she likes the capsule opened, and the beads I sprinkle on a spoonful of vanilla ice cream with strawberry swirl. It’s a good thing we are isolated at home so I don’t have to carry these things around, but I need to be extra clever when we are at clinic and appointments when having to give her these meds when we are not in the comfort of our own apt. Please pray for wisdom to know how to give her these meds when these accompaniments are not available.
Graft versus host disease is not something that we want Ella Joy have. She has been suffering from severe tummy pains where she needed narcotics to ease her pain as well as projectile vomiting. However, several attendings from our BMT team have said that although it is not favorable to have it, there could be graft versus leukemia in the midst of it. This is our huge prayer request, that although GVHD is undesirable, we pray that as Ella Joy has been throwing up and experiencing stomach pains, Asaph’s cells would not only be attacking Ella Joy’s good cells, but attacking any leukemia cells that might be hiding in her bone marrow or spinal fluid.
It kind of reminds me of the spiritual battles and struggles we face each day. No battle or struggle is desirable. Not having to fight certain struggles would actually be ideal! But, if there is going to be a spiritual battle or a struggle, may we fight the good fight and come out stronger than before! May we overcome those sins that entangle us, and get rid of them once and for all! The enemy would love to keep dangling those sins in our face, but with the power of prayer and His Word and His supernatural empowerment, we can overcome! It’s MVSD (me versus sin disease)!
“So get rid of your old self, which made you live as you used to – the old self that was being destroyed by its deceitful desires. Your hearts and minds must be made completely new, and you must put on the new self, which is created in God’s likeness and reveals itself in the true life that is upright and holy.” – Ephesians 4:22-24
We want to thank you once again for all your continual prayers and encouragement you have given to us!
I would like to end this post with one of my favorite drawings Ella Joy made soon after we moved into our isolation apartment. She is many times super bossy with Asaph, and they argue over pokemon cards just about every day, but I know for sure deep in her heart, she is so thankful to God for him, and for the fact that he helped save her life.