Esther spiked another fever tonight...another blood culture, another day at the hospital. Her ANC was up to 348 today, so that is good. At this point even if she's over 500, we'll have to stay until she's had at least 24 hours fever free and clean blood cultures.
She has a cold and the inpatient doctor thinks her fever is because of that. I certainly hope so. There has been nothing in her blood cultures, so we wait. Wait for her body to be able to fight the infection and get rid of this cold.
We were supposed to meet with the surgeon today. Anthony drove down ready to learn all about surgery, but because we were inpatient Esther couldn't go over to the clinic side of the hospital and her appointment was canceled. Oh, well I am going to sleep so much better tonight with my own pillow delivered by my amazing husband. Esther's surgeon did come by to give me a general idea of what her surgery will be like.
It's going to be fairly invasive. We had initially thought it could be laproscopic, but it will not. There are some surgeons who remove neuroblastoma laproscopically, but this surgeon (and a world renown surgeon at Sloan-Kettering) believe it's best to open up the patient. She described neuroblastoma as "sticky" and it tends to stick to anything it touches and a lot of what it touches are veins and arteries. She feels much better about getting as many cells as possible with the least damage to what the tumor has "stuck" to by opening Esther up. It will be about 5 hours to get the tumor, lymph nodes that have caught the cancer, her adrenal gland and there is a small possibility she'll loose her kidney. She said only about 5% of neuroblastoma kids actually loose the kidney and it has more to do with how much the tumor has effected the connective veins rather than the actual kidney. Esther will have 5-7 days in the hospital.
I learned that Esther is the first child at Children's to go through this new protocol, including having surgery after the 4th round of chemo. Usually it's done after the 5th round. As the doctor said today, Esther's treatment is very complicated. One of the nurses this week was telling a nurse she was training that Esther's treatment is one of the most intense she's ever heard about. Honestly, we are feeling this intensity.
Today was a recovery day for me. When Esther was bleeding so much yesterday I just dealt with it. Today I felt it. This cancer thing is scary and weighty and exhausting. A friend sent me a message today to let me know after learning about Esther's nose bleed she stopped at a blood drive. That blessed me. She thought of Esther while she donated the blood, such a sweet friend. Whether or not the blood goes directly to Esther, please consider donating blood. You can do it here at Children's Hospital in Denver or in Fort Collins or where ever you are. Not to be all dramatic or anything, but without those platelets and the blood Esther received yesterday, she may have died. You could literally be saving someone's life.
I am encouraged by God's faithfulness to have Anthony here yesterday and that Esther's surgery is a week later than we anticipated. We will have an extra week to be home...as long as these fevers go away. Another cool thing is that in the morning before Esther's bleeding yesterday, four people sent me emails with verses or songs. They all had similar themes and blessed me. God knew I would need the extra encouragement with such frightening and exhausting days. He set me up for success...that's the God I know. He does not set us up to fail, He is gracious and merciful. He prepares us for the paths we will cross. He is tender and loving.
Sorry to hear sweet Esther has yet another fever and her nose bleed incident sounds terribly frightening! I hope you slept a little better with your own pillow. Will continue to pray for her and your entire family as you walk this scary and uncertain road. As you said, God is there with his grace and mercy - may you have a peaceful and uneventful day.
ReplyDeleteMy name is Staci I work with Jeri I don't know you but been reading about your poor little girl.....my heart goes out to her and your family I couldn't imagine my son going thru what your daughter is going thru. It breaks my heart for her and your family! You truly are amusing parents and very strong to endure such a horrible experience! My prayers go out to you all and and for a speedy recovery to beat this!!!!!
ReplyDeleteAmazing parents that is not amusing.....stupid auto correct
DeleteThank you, Staci! We appreciate your prayers and support. It is a blessing to us!
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