Sickle Cell Disease

Leila has officially been diagnosed with Sickle Cell Disease - the Hemoglobin SS Type, which is the most severe and most common type. We have started seeing the doctors at the Pediatric  Hematology/Oncology Dept. at VCU, and they are awesome. I can't say enough good things about her care so far. They are incredibly attentive, smart and available. Because she has the most severe type she is able to take the only medication available for sickle cell - Hydroxyurea. It's actually a chemo drug but in small doses like Leila is taking it doesn't have the side effects of chemo. It will hopefully prolong her life and decrease the frequency and severity of the pain crises that sickle cell is known for. The lifespan in 1973 was only 14 years old (!!!!)  and right now it's in the 40s though they don't yet know how much longer regularly taking hydroxyurea will add to it. Marriage, babies, career - a momma starts to think about all these things when learning these statistics. The next day is never guaranteed but still, no parent likes to think they will live longer than their child. No worrying about tomorrow when today has enough trouble of it's own (Matt. 6:34 paraphrase). I think I preach this to myself every hour. Worry is not becoming but a hard habit to break!

We also learned during our almost 4 hour visit at VCU that a fever over 100.4 is a medical emergency, so we learned quickly what that looked like when Leila spiked a 103 fever several days later - something we'd normally treat at home with Advil, rest and a cool compress. Thankfully, Grandma and Grandpa were in town, so Geoff and I took Leila to the ER. They ruled out some major infections that would be much harder for her body to fight due to SS, hooked her up to an IV to give her fluids and an antibiotic and then sent us home. She recovered quickly (our wallet did not - eek! We found out after the fact we can start at Kid Med next time, which is a little more budget friendly). A few days later we found some sores on her tongue that were causing a ton of pain, so we took a trip to the pediatrician after we had already visited the eye doctor that morning (guess who despises doctor visits now?! Leila!). He thought it was related to her virus that had put her in the ER, so he prescribed some fancy mouthwash that helped numb her mouth so she could at least eat. Whew! I am not a momma that is quick to run to the doctor but the doctors are quick to call me in with Miss Leila, so we obey.

The hematologist said to expect this first year to be tough because she doesn't have American immunities, so she'll likely catch a lot of little things at school that will lead to doctor visits. Prayers, a healthy diet and thieves oil (essential oil that is supposed to help ward off germs - we will try it!) are on the daily docket. We also have to keep her well hydrated. Sounds easy, right? Not when you've grown up having very little water in Africa because getting clean water was not easy. I'm now the water Nazi (aka annoying mom). 

This is a new road for us - regular doctor visits, medicine for life, kid viruses necessitating ER visits. We are grateful we seem to already have a good team in place and even more thankful to have our sweet girl home. Thank you for praying with us!