Well, the mean JA beast is continuing to attack. As Parker shared in his last blog, the biggest sign that the rilonacept (the study biologic he has been on for 3 years) is no longer working well was because his knee blew up huge. Since he wrote the last blog, he has continued to have low grade fevers, rashes, swelling, and increase pain. We have made the difficult decision to move on to the next biologic, Ilaris. It too is an IL-1 drug and for us that is promising. But the scary part is, it is the last one to try.
Yesterday, Parker was admitted into the hospital to try to control his pain and swelling a little better but also to run tests. Labs were taken last night and this morning. Ultrasounds of his joints will happen soon and later today he is scheduled for a 4 hour MRI of cervical, thoracic, and lumbar spine along with SI joints and hips/pelvis with contrast. The new doc in partnership with his pediatric rheumatologist is experienced with ultrasounds in pediatrics and joint injections and will be doing those tests.
While working on getting the insurance to process the Ilaris, Novartis Pharmaceutical has agreed to provide the first dose for free and it is being shipped here. This is pretty incredible news because as the doc says, “this is like liquid gold at $30,000 a shot”. We will cherish it and hope it does a fabulous job at helping Parker. I literally just got news, thank God, that the insurance has approved the Ilaris for two years. Incredible news.
And today I met the office manager that processes all these medical needs. She came to Parker’s room herself to deliver the good news of a two year approval. What a beautiful angel on earth. There are so many people working behind the scenes for our son and I am eternally grateful.
My prayers have been constant. I am praying, of course, for our son’s health to be restored. I am also praying for his school to remain constant in supporting him. I am most concerned about school and I know we shouldn’t worry because his health is most important, but I firmly believe that school is part of his health…his social emotional health…his opportunity to feel part of his community; his chance to connect with friends; and of course an education for his future. This school year started off great and still to this day he has not used his wheelchair at school. He has pushed through some tough days with remarkable strength and drive. I also have been watching him grow in his relationships and his outlook of his future has been more optimistic. These are all huge blessings. So of course, I hope for this to remain possible.
I will write more later once we have more results. We thank all of you for your support and care.
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