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Hi Ladies. Lots has happened this week, and I probably owe one oncologist an apology for being rude but honestly I don't know.
Yesterday we saw the oncologist. My fears have been confirmed and there are new LCH lesions on Joey's scalp and shoulder. This while on the current treatment. Since skin is supposed to be the easiest to treat, these lesions appearing during treatment are a huge concern. To make a long and emotion filled story short, we are trying a steroid cream on his lesions to see if those will clear up the skin lesions and hoping the 2CdA is working on the inside, on his lungs and mediastinal tumor.
Joey has CT scans on Wednesday. Honestly right now I'm struggling. My gut tells me that there is no improvement but I am trusting God to work in Joey. Which brings me to why I am asking for prayer.
These scans are crucial. These are "make or break" for this treatment. In the LCH world there are few options. One is LCH III which we've done and it is considered a failure. The next is this treatment we are on. And the next and final chemo option is full Salvage, which means a 6 month hospital admission and aggressive, toxic chemo, I don't even want to think about the final "maybe" option for treatment...
So I am asking for prayer for improved if not CLEAN scans. CLEAN would mean no active disease remaining in liver, lungs, mass, or anywhere else the scan checks.
I am also asking for prayer for protection from infection and other germs. His immune system is the worst its been in months, and we are taking the steps we need to take in order to protect him, but only God can protect him from everything.
Also that this cream works on his skin lesions and the lesions leave no lasting permanent mark on him.
Traci your prayer warrior team is still working for you and your family. I pray that God will put his healing hands on little Joey. I pray for clean scans and no return of the disease. You have been so strong through this all and even though you may not feel strong in the moment look back at everything God has led you through.
Thank you for the prayers ladies. Yesterday i stopped at a local church that has been praying for Joey. I never told them that LCH is a blood disease. As they were praying for him with me one of them said "heal his blood".
I stood there in complete shock. NO one there knew that LCH was a blood disease caused by a certain blood cell not working the way it should. They knew he had the solid tumor, the lung, liver, ear, skin involvement. But no one knew this was a blood disease. I asked afterwards how he knew, and he told me he didn't, he just felt it.
I know God is carrying us right now, but I am feeling overwhelmed with this. Over 1/2 of his life has been spent battling for his life and its just not fair!