On the way home from Florida, the kids have nothing left!
This week we are in Florida attending a family camp for kids who have cancer. It has been an amazing experience, we have been able to sit down with lots of Other families that know exactly what we’re going through.
They have pampered us and gone through extreme measures to make sure we feel comfortable. Our meals are cooked for us, our clothes are washed, beds are made, and activities planned for the kids and adults.
Everyone is having a great time!
Phoebe and I (Amey) came home late this afternoon. We are still not sure what caused her sustained fever since all of her labs were good and she had no other symptoms. Unfortunately, whenever Phoebe has a fever or her body seems to be fighting off an infection we have to triple dose her steroids to give her extra cortisol support or else she could crash and become unconscious or unresponsive. So, the yucky side-effects of the steroids have begun; lots of weeping, ultra-sensitivity, tantrums, frustration, and a voracious appetite. They also interfere with her sleep, so we are in for a long night.
Otherwise, she has been pretty content at the hospital. She rolled onto D6 (the oncology floor) and was given a superstar’s welcome by all of her old nurses and hospital staff. She ate up all the attention and proudly showed off her new hair and eyelashes. She was extra excited when her Mammaw showed up with tortilla chips and snuggles and I think the whole stay felt like a fun overnight visit to see lots of folks she knows and loves. She’s not even phased by the hospital and that just has to be God’s grace in her life.
We spent the morning in the playroom making crafts and waiting to get the okay to go home and we were on the road back to East Texas around 4:30. Please pray that these steroids will filter out quickly and give her a break, poor Phoebes is a bit of a wreck tonight.
Thank you for praying for us and thinking of us!
Phoebe is doing much better this morning and we may go home as early as this afternoon. Her sodium is still a bit high And we’re still not sure why she is struggling.
But Phoebe is singing “Frère Jacques” and in high spirits! Thank you all for you quick responses and prayer. We will update you this afternoon.
Phoebe is having a rough day. Phoebe had fever last night and was admitted to the ER. After sleeping most of the day in the ER, her doctors admitted her to the oncology floor. She is having a hard time staying awake and her electrolytes are in bad shape (potassium is very low, chloride is high and sodium is very high). Her kidneys seem to be acting funny as well.
We are not certain what is causing it, but at this point sepsis is a very real concern as she is still immune compromised to some degree. For those of you who remember, when Phoebe went septic last year, this is how it began.
It is very strange to feel that old familiar fear and worry spring up in my gut. After 3 months of Phoebe doing so great, I guess I started to let my guard down. Our Phoebe has and always will be in God’s hands and we trust Him fully. As always, “we walk by faith, not by sight.”
This was the first time she has been back to the oncology floor since her last chemo in March and it is obvious that Phoebe is still very much loved…
Please pray for our sweet girl…