4/2/26
The plan has once again changed. Ela went for a very thorough eye evaluation today to see if her eyes are ok and if the ophthalmology team would clear her to continue this Daratumumab infusion. She had a small effusion causing a myopic shift hence the blurry vision. This is a rare (under 1%) reaction that can happen with the Daratumamab (Dara) infusion. They haven’t seen it here at CHOP, until now. It can also be caused with high glucose. It’s hard to tell if one or both contributed in Ela’s case.
Although this is a more “minor” finding and the ophthalmology team said they would still allow for continuing the infusion, we and the cardiology team are a little hesitant to resume this treatment. So right now, the Dara treatment is temporarily off the table. While she is admitted and has a good IV (that was extremely hard to get in), the team wants to give her some kind of treatment. She will just get another round of the IVIg tonight.
Her team will discuss her case on Tuesday with other doctors and try to come up with some other options although, as you know, they are limited. This particular infusion was what the team thought was her best option.
I’m just going to pray that no matter what treatments she ends up doing, God will just take this rejection away for good, if it be in His plan for her, so that we can have many many wonderful years with Ela and this heart.
This is heartbreaking, but God has a plan. We are grateful the eye issue isn’t more serious. We will be praying for a blessed Resurrection weekend and for the consultation on Tuesday. Hugs to you all. May you feel the comfort that only comes from Jesus in the coming days as He works His plan in your lives. We still believe in miracles!
Amen … we’re praying with you and for all of you.
I hate all this with a passion but totally endorse your conclusion. Let’s all pray it hard!!! ♥️♥️♥️♥️♥️♥️♥️
I hate all this with a passion but totally endorse your conclusion. Let’s all pray it hard!!! ♥️♥️♥️♥️♥️♥️♥️ The next Easter Bunny ever!!!
Lifting up little Ela up for God’s healing! Praying for strength and wisdom for you the team in the days ahead!
We earnestly pray for each of you and ask that our Lord Jesus has a hand in the healing process!
Praying for Ella, and each of you in this hard place. 🙏😘
Joining the prayer that the Lord would remove the rejection altogether.
Prayers for Ela and her family.Hope they can find a new med for her soon
Prayers for Ela and her family.
Praying for an end to the rejection. What a beautiful smile on that little bunny. Love to you all.
Oh my goodness. She is definitely a hard case. How does she continue to look so good when shes going thru all this?! Praying for God to give the team the wisdom and to figure out another good option. 🙏🙏❤️❤️