Haven started her first dose of this other chemo last Friday. By Saturday, there is an infection in her big toe on the left foot. By Sunday morning, there are three more toes on the right foot that are infected.
By infected - I mean green, gooey, swollen.
By Sunday afternoon her big toe on her right foot is cracked open and bleeding. The bleeding has continued and during chemo yesterday at the hospital it was bleeding again.
She had 3 doctors look at her feet yesterday and the decision was made that she needs surgery on the toes.
Haven has less than a month to do this surgery because at that point her immune system will be gone and the risk increases significantly.
Considering that we already have surgery scheduled for her eyes on March 26th this only leaves me with next week available. Haven has an appointment with the surgeon on Tuesday, March 17th and hopefully we can get the surgery done next week.
Making it two surgeries in two weeks. If we're hard to reach over the next few weeks you will know why.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Subscribe to:
Post Comments (Atom)
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
We'll be thinking about you and praying for nothing but the best for sweet Haven. I'm so sorry you have to go through this. I'm not a parent, so I can only imagine how tough it is to even watch your child have a boo boo...let alone everything you're dealing with. I'm really glad you have such an amazing support system, and that at least gives you comfort. Just know that there are a lot of people here at Under Armour and all over the place, whether you know them well or not, who are checking in and sending positive energy and prayers your way.
ReplyDeleteThank you Anne!
ReplyDelete