Daniel'sFight w/ Evans Syndrome
Daniel has decided he does not have enough physical energy with all the treatments to continue to play basketball. He will miss it. We are so proud of him for trying but it's just to much running for him.
We received the hizentra welcome package and the nurse will be starting this week with his SUBQ IGG weekly infusions at home. I am so scared of what these weekly infusions are going to cost us, but the IVIG fusions at the clinic are not holding his igg levels. So we are doing them weekly to give him more stability.
Daniel will continue to be home bound until April. With home bound instruction in our district he doesn't get a report card just a pass or fail grade. Daniel has passed the first marking period. We are so proud that he is able to keep up.
As of now we are scheduled to go back to NIH in January.
Today is Giving Tuesday and I want to thank everyone who has helped us and continues to help. We will never be able to repay all the kindness and the helped we have received. Thank you and God Bless you all.
We moved in with only a table and Tv's that we could wash. We are slowly starting to make it home but these new meds and and weekly infusions have set us back. The travelling back and forth to Maryland (NIH) and CINJ has become a big issue with gas and tolls.
I want to thank you all for your prayers and support for Daniel. We are pushing through and it's been tough, but our family is strong and can make it through anything that comes our way.
With that being said, after all the testing on his lungs the past few days and the chemo he was on for 3 month suppressing his immune system the nodules in his lungs showed some improvement on the existing nodules, but did not help with suppressing new nodules from forming. So we have increase his chemo and he is on it for another 6 months. His monthly IVIG are discontinued monthly and he is starting SUB Q IGG weekly at home. I will administer it to him one day a week instead of going to the hospital monthly.
Daniel spleens continues to grow so we are having to watch for pain and discomfort.
Please continue to keep Daniel in your prayers and thank you to everyone for all your thought and prayers. Thank you for all your support. God Bless you all.
Since Daniel has been hospitalized last February until May on and off weeks at a time I have put off blood drives. The team has contacted me today and want to host a Blood Drive in Honor of Daniel in January. I will update as they get a date for it.
We are collecting again NEW toys, books, coloring books crayons puzzles etc for a Christmas Drive for the children in the hospital on Christmas. If you would like to donate please contact me. We are collecting until November 30th.
Again thank you for all your support. God Bless you all
This will be the cause of the day on Thursday on the Tommy G Show. We are the 3-6PM show on 1450WCTC. I am also mentioning the blood drive. Good luck, you are in our prayers.