Day + 35
We are so thankful for each one of you who continue to keep Ella Joy in your hearts and prayers! Tomorrow, it will be 2 weeks we are outpatient in our RMH isolation apartment.
Since Ella Joy continues to have nausea and stomach pains, the BMT scheduled an upper endoscopy and flex sig this coming Friday 8/11 at 11am to check for GVHD. Please pray everything would go smoothly as they insert these cameras from both ends (throat and bottom) both with biopsies to see if Ella joy has GVHD.
The most current CT scan shows that there are still unknown nodules in her lungs. Please pray that these would disappear with meds and time. If not, they will have to do a lung flush and put a third camera down for a pulmonary endoscopy.
Asaph and Ella Joy stay in the apartment for the most part. During the week, Asaph goes to Hutch summer camp and Ella Joy goes to SCCA and SCH for labs, appointments and procedures. Two times now, Ella Joy and I saw Asaph off to the bus, and soon after, Ella Joy asked me where Asaph was. It was alarming the first time, but the second time, I am considering calling her radiologist and talking to him about this noticeable short term memory. Please pray that she would be able to remember things and that this short-term memory loss would not be a long term side effect.
Ella Joy is getting more interested in foods, and eating a bite of sorbet here and there, and a funyun every once in a while, but please pray that we would have wisdom when it is time to wean her off her feeds and plan for her to eat real foods. Before we head back for Chicago, I would love to have her completely off her Nourish feeds and onto real foods.
Ella Joy had a nasal wash and swab, but she tested negative for any viruses. She had a very slight runny nose at the time, and continues to have a mucositis cough. We are so thankful she doesn’t have any viruses. Please pray that she would continue to use hand sanitizer so she can stay away from germs and viruses, especially during our shuttle rides to and from sch to scca as well as during our clinic and hospital visits.
Mike is planning on traveling to Chicago for work sometime within the next few weeks. Please pray that when he is away, Ella Joy would not need to be inpatient, and that the schedule would work out so I can take Asaph to the bus for summer camp, and also take Ella Joy to her appointments at SCCA and SCH.
Asaph has been busy with summer school. A few days ago, I picked Asaph up from the bus that shuttles him home from Hutch summer camp. I asked him how his day was, and he sighed and said that he was extremely stressed out. I asked him why and this is what he said, “My friend doesn’t believe in God! I told him that God is real and you should believe in Him!” I was so worried he had a bad day at camp, but if this is what stresses him out, then I believe God is answering the prayer request to raise mini Kingdom workers!
In Greek mythology, the Chimera was a creature with the head of a lion, the body of a goat and tail of a serpent. In medical terms for Ella Joy, the term chimera is used to designate Ella Joy’s body with cells derived from Asaph. The phenomenon of co-existence of cells from two different organisms (evolved from two different zygotes) in one body is called chimerism. All this to say that Ella Joy has 100% chimerism! Praise the Lord!
It is my prayer that in the same way that Asaph’s cells were implanted into Ella Joy’s bone marrow, God’s Word would be implanted into their hearts. That the Father, Son and Holy Spirit would be at work in their lives, as they live for His glory.
All this talk of chimerism reminds me of Thomas Ken’s doxology,
“Praise God from whom all blessings flow;
Praise Him all creatures here below;
Praise Him above ye heavenly host;
Praise Father, Son and Holy Ghost.
“Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit” – Matthew 28:19