For those wondering, here’s an update on Caroline (we saw the rheumatologist yesterday). In the three weeks since he’s seen her, he was concerned because her arthritis has already progressed and worsened. It’s in more small joints of her hands and wrists and now in her ankles as well. After five minutes or so of walking she starts complaining of pain in her ankles and one of us usually has to carry her on our back.
The appointment was sobering, to say the least, and I got that same punched-in-the-gut feeling the first time I met with my surgeon and he gave me the skinny on my cancer.
Her arthritis is progressing quickly and with how it’s presenting the doctor is almost certain it’s psoriatic arthritis which brings with it a list of possible other complications. He said with juvenile arthritis studies show that if you treat it the way you treat cancer (jump on it hard right off the bat then go on a maintenance program) there’s a much better chance of it going into remission. With how it’s progressing, if we do nothing, it will eventually cripple her.
For the most part, Caroline is her same old seven-year-old happy-go-lucky self but she does have morning stiffness and pain and now that her ankles are involved, prolonged weight-bearing and even bike riding causes pain.
Please pray for her and us. Obviously, Jen and I are struggling with this. It could be something Caroline will simply outgrow, or it could be something she’ll battle the rest of her life. This is our little girl we’re dealing with here. It’s one thing for me to get cancer; it’s a completely different thing for my baby girl to deal with something like this. As a daddy, you want to be able to protect your girls, keep them from pain and suffering, but there’s nothing you can do when it’s her own body that’s attacking her. I feel helpless, frustrated, and scared.