In the week of Connor's 4th year anniversary of being admitted to Chicago's Memorial Children's Hospital we got some of the best JDM related news in regards to Connor's care.
NO MORE PREDNISOLONE/STEROIDS AS OF TODAY!
This is huge in so many ways! The Prednisolone and Solumedrol have been our biggest mental fight and for Connor a physical and emotional fight. We know the steroid is one of the biggest drug in the fight against this disease but watching your son put this drug into his body for 4 years, 1460 days plus, has been heartbreaking in its own way. The side effects are so wide reaching, 'minor ones' are weight gain and slowing of growth. A bigger concern had been his eye sight which were checked almost every 3 months. On an emotional battle Connor had to deal with the mood swings steroid causes. From sadness, depression to anger and frustrations. Emotions that can't be controlled and are all do to the impact steroids have on the brain.
So to get the e-mail that Connor's blood work from Monday came back looking great again and that we can stop the steroid for now was in our book one of the best news we had in relations to JDM in 4 years!
Is the battle over? No not yet. He is not in remission and will still need his weekly Methrotrexate/Chemo injections for now, but one step at a time!
Thank You to everyone of you that celebrated with us yesterday through FB. You all, or most of you, have been with us from the get go and so you realized what complete joy this brought to us.
On a little by note, when I received the e-mail I called everyone together and sad I had some great JDM news for Connor. Connor yelled out; "YAY THEY FOUND A CURE!'.
This makes you realize how much that is in the front of Connors mind. No Cure yet but that day will come! I am counting on it.
I am off now to take Alexander soon for his Orthopedics Appointment. While one is celebrating progress our other dumpling is worried he might need surgery on his foot or feet soon. No rest yet in the medical world but one step at a time.
Much Love!
NO MORE PREDNISOLONE/STEROIDS AS OF TODAY!
This is huge in so many ways! The Prednisolone and Solumedrol have been our biggest mental fight and for Connor a physical and emotional fight. We know the steroid is one of the biggest drug in the fight against this disease but watching your son put this drug into his body for 4 years, 1460 days plus, has been heartbreaking in its own way. The side effects are so wide reaching, 'minor ones' are weight gain and slowing of growth. A bigger concern had been his eye sight which were checked almost every 3 months. On an emotional battle Connor had to deal with the mood swings steroid causes. From sadness, depression to anger and frustrations. Emotions that can't be controlled and are all do to the impact steroids have on the brain.
So to get the e-mail that Connor's blood work from Monday came back looking great again and that we can stop the steroid for now was in our book one of the best news we had in relations to JDM in 4 years!
Is the battle over? No not yet. He is not in remission and will still need his weekly Methrotrexate/Chemo injections for now, but one step at a time!
Thank You to everyone of you that celebrated with us yesterday through FB. You all, or most of you, have been with us from the get go and so you realized what complete joy this brought to us.
On a little by note, when I received the e-mail I called everyone together and sad I had some great JDM news for Connor. Connor yelled out; "YAY THEY FOUND A CURE!'.
This makes you realize how much that is in the front of Connors mind. No Cure yet but that day will come! I am counting on it.
I am off now to take Alexander soon for his Orthopedics Appointment. While one is celebrating progress our other dumpling is worried he might need surgery on his foot or feet soon. No rest yet in the medical world but one step at a time.
Much Love!
Its been a long four years, but finally a light at the end of the tunnel! This is amazing news. We are so happy for Connor and your whole family.
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