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One year ago today Dr. Rubin walked into room 317 and told us it was official... Joey had Langerhan's Cell Histiocytosis. She wanted to wait until the next day to have a treatment meeting with the entire team before starting treatment. I looked at Joey and said whatever treatment he needed start it immediately. I just wanted to save my baby.
Shortly after that talk we sat in the conference room. me, Dr. Rubin and Megan (case manager) and quickly reviewed that plan. The protocol was called LCH III. It had a 80% success rate... but the 20% it did not work on was typically kids under 2 and kids with organ involvement. Joey fell into both of those categories. but I believed it would be a success.
That night our battle to heal began. Joey received his very first chemo 1 year ago today, at 8 PM.
I cried that night. I had just allowed a poison to be put in my son, a poison that gives hope to heal him but also a poison that puts him at so much risk for everything else.
My cry to God that night was simple... let this treatment work, protect him from infections, and carry him through this battle. While the treatment ultimately did not work long term, short term it did what it needed to do, it brought Joey out of the danger zone with this disease... his airway opened up more and the strain on his heart from the mass pushing on it and the arteries was relieved because the chemo shrunk the mass in his chest and throat.
God has protected him from infections, his treatment has only been delayed a few times and only once due to infection (and a relatively minor infection at that).
We have come a long way in 1 year. Today is a celebration of LIFE, for without that day 1 year ago, we would not have Joey here today.
Please continue to pray for his protection and complete healing. And today, please also pray for my entire family as they battle a bug that has everyone but me sick.
What an amazing year...not in a good way, entirely, but amazing nonetheless how far he's come and how much you all have overcome. You and Joey are always in my prayers, and I'm thinking of you especially on this sad anniversary.