Certain factors affect prognosis (chance of recovery) and treatment options. This disease can cause any number of life long problems.
When he was born he came out with an unknown rash all over his body and they took him straight to the NICU. It took them a week to find out he had LCH. We were told it was skin only and it would heal on its own.... which it seemed to do until about a week ago when it came back and extremely bad on his head. After joined a LCH support group on FB and sharing his story and pics everyone is urging us to go to Houston and see the #1 doctor for this diesease. We foresee him needing chemo treatment in which some cases patients require multiple treatments. Even when it seems to be cured, patents have a risk of it returning. This disease is extremely scary because you never know where it could attack next. The future is unknown and scary.
I have not talked about it much or even been able to say my son has cancer, I am still in denial. I am completely stressed out and worried every minute. My Husband is in the Marine Corps, I work from home and I fear the stress of everything is going to affect my job and income. Anyone who knows me knows I HATE asking for help! But I am here asking. The future is unknown and I don’t want to have to stress about things that don’t need stressing about. I have two other kids both in school. We have no family here in California and I would love to hire some help with the kids for times when we need for doctors appointments and traveling so they won’t miss school!
We were told we may have to pay for part of the medical expenses in TX as well. Any funds raised will go towards medical, travel, bills, help with the other kids. If we can raise our goal we would love to donate half directly to the research team at Texas Children’s Hospital for finding a cure for this, as they still don’t know what causes it or how to cure it completely.
Please please share this campaign and help us help our baby. He is now only a month old, and we don’t know what his future holds. Thank you so much for reading!
To read more about what exactly LCH is go to https://www.texaschildrens.org/research/area/histiocytosis
- Daniel Phillips
- Kimberly Massey
- Victoria Grodz
- Cathy Eastwood
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