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Hello ladies, my name is Traci. I am mom to David (7 in may), Melanie (3) and Joey (9-1/2 months). My DH is DJ.
Melanie is severly speech delayed and just started talking a few months ago. She had severe pressure behind her ears causing her speech delay but we also found out that there were delays in other areas. We had started an IEP for her through the school but we had to move before the process was finished so we need to start that again, except this district is beign very difficult. So in the meantime she goes to speech therapy each week while we wait for a developmental assessment outside the school system.
Joey has a rare disease called Langerhans Cell Histiocytosis, which is a prolific disease that affects 1 in 200,000 children that acts and is treated the same as cancer but is not considered a cancer. He has been in treatment for 13 weeks now, and still has 39 weeks minimum to go. There is no cure and the reactivation rate for LCH is about 50% according to last studies, but the protocal he is on is fairly new (just out of trials). We have weekly labs drawn for him, as well as IV chemo every 3 weeks now (was weekly) and oral chemo daily and weekly. He was very delayed a few months ago, but now that his disease is being treated he is not delayed. However we don't know what the long term effects of his treatment or the long term effects of LCH are.
Right now our weekly schedule is Mondays: Kids park Day
Tuesday: Melanie Speech
Thursday: Oncologist and every 3 weeks chemo
Friday: David's Counseling
I also take care of my sister during the week. She has Ehler Danlos, Spina Bifida, Addisons Disease, Dysautonomia, and Prolonged QT Syndrome.
Wow, hun. You have your hands full! I always dread IEP time, so good luck with that!! I hope the school starts working for you. They really should be!
Joey sounds like a wonderful little fighter. I totally agree with the longterm effects being unknown for chemo (and LCH). I'm a childhood cancer survivor and my treatments may have caused my DD's birth defects. Obviously we'll never know for sure. I'm going to add his caringBridge page to my list that I follow.
((Hugs)) to you for also caring for your sister!! Amazing!
Wow, you really have your hands full! You're going to have to share some of your destress solutions with the rest of us.
Honestly my destress solution is look at DH and say "all yours" and then go lock myself in the bathroom for an hour... Or call my mom and say "Hey I need to go shopping can you watch the kids?" then taking a LONG time to shop for ONE item...