We are so appreciative of all your thoughts and prayers when Ella Joy was admitted to the emergency room 2 times in less than a week! The first time, when we got off the phone with our oncologist, she needed to be rushed to the ER in the middle of the night because she had a high fever and was shivering. The second time, when the fever came back, it had been over 48 hours, and the oncologist told us we had to come back to make sure she did not have a port infection. It turned out she had entiro and rhino virus which is pretty much like a common cold for the average child, but for Ella Joy, it meant 2 visits to the ER! The second time she was in the ER, I stayed with her and the nurse who was accessing her port did not flush it out with heparin. When talking to the charge nurse, I explained how not flushing out the port with heparin could lead to clots. It was a very strange night because they said things like the resident was supposed to put in an order for heparin, and then the resident said that the nurse was supposed to remember it, but in the end, the funny part was when a nurse asked me if I was an oncologist. I responded, “No, but I am a momcologist!” I realize I have to watch everyone very carefully especially in the ER, because a lot of times there are residents and nurses from different hospitals and the procedures and protocols may not always be the same as at Luries. I have to watch like a hawk and make sure they use a 20 gauge ¾ yellow needle, as well as making sure they clean with alcohol to disinfect too … God truly heard all your prayers and we are so thankful for all of you who prayed for Ella Joy throughout her 2 visits to the ER, as well as for this week’s clinic visit.
Our family cannot thank Kelsey enough! Driving us to RMH, and watching Asaph at Luries while Ella Joy got chemo and counts, she is truly such a blessing to us! We are so excited to announce that Ella Joy’s counts were once again looking great this week! Our next clinic visit will be September 10th Thursday. Please pray with us that she would continue to be healthy as she starts school on the 19th. Please pray she would stay away from germs and remember to use plenty of hand sanitizer. Last year she was in half-day kindergarten, so she could come home and take naps. This is the first year she will be in school for the entire day! Please pray she will be able to keep up with the other children and that God would protect her throughout the school day.
Ella Joy’s dosage for her prednisone has increased even more than before, and we are definitely seeing the effects. She has been extremely irritable and moody in addition to being ravenously hungry. She will still be on her prednisone pills when she starts school. Please pray that He would help her to have self-control and that she would be able to make friends and be kind to others in the midst of her mood swings : )
If I am entirely honest, I am constantly praying to God that Ella Joy’s cancer would truly be zero and that she would for sure have negative MRD. It has been something that has been heavy on my heart, and yet I know that the kind of cancer she has is extremely aggressive. Many of the children who have relapsed were doing just fine in the maintenance stage that Ella Joy is currently in. Please pray that I would not focus on the worst-case scenarios, but instead that I would meditate on His Word:
“You promised to turn my mourning into joy and gladness” – Isaiah 61:1-3
“You have turned my mourning into dancing for me” Psalm 30:11
Mike has been such an amazing source of support for me throughout Ella Joy’s battle against cancer. There have been many nights we have cried and prayed together, asking God to protect and heal our only daughter. Praying for strength to help us in the midst of these hardest times. Helping give daily chemo meds to Ella Joy every night, and driving us to the ER in the middle of the night when he is beyond tired, there were many times we needed the Lord to turn our mourning into dancing.
In honor of Psalm 30:11, I started this blog with Ella Joy and Asaph doing the whip/nae nae, and now I would like to end it with their “appa” (who taught them every move they know) doing the same Silentó moves. Sometimes He turns our mourning into whip and nae nae’ing … enjoy!