Friday, August 29, 2014

Plan D

     Summer is over, time to get back to school.
Looking forward to the routine, but am a little sad this summer has gone by so fast. Also a bit disappointed we got so little accomplished on the health front.

     After communicating back and forth between researchers, specialists and the pharmaceutical company, the trial my son was partaking in was terminated.  A mistake was made, not one person was to blame, just a couple of circumstances combined, some fine print that was overseen, some misinterpretation, some lack of supervision, whatever it was: we had to stop. What it comes down to is that the trial has not been performed according to the guidelines that were set and is therefore invalid. We can not start over because he has already been exposed to the drug; it’s in his system, so again, a “contaminated” baseline. Too bad, so sad, but we have to move forward.

     The hopes we had to get a good start and see some great improvement is my son’s joints were crushed too. A lot of our time, our doc’s time, a lot of people’s time just wasted, unfortunately.  We made 7 trips to Calgary over the break and we have not made any gains. In fact, we are back to the drawing board and have to start from scratch.

     On to plan D.

     We decided we would give Enbrel a chance. It has never worked for my daughter, therefore we initially skipped it, but now with Humira not doing what we would have liked it to do, and the Certolizumab  being discontinued,  we thought we may as well give Enbrel a chance, who knows!

"Hop on the bed and let's check out those joints."


     So….in the process of getting that going. Insurance has approved it, the syringes are waiting in the fridge, and now we are waiting for a nurse to come and give him training. A less painful injection than Humira, but the down side is that he has to take it weekly. 
  
     Next week school start. First day of school there are volleyball try-outs. He is really looking forward to that. I am not, with his hands looking the way they do….but I’m not going to deny him this. We shall see how it all goes. 

     There is no need to look back; we do need to look forward. I have to admit though, that I would have hoped this summer would have given us some positive energy to start the new school year off on a good note.
 
     This too shall pass and we will tackle the beast somehow, we will even do it with a smile on! We've

done it once, we can do it again!



3 comments:

  1. I hope the Enbrel works for him! Good luck with the v-ball tryouts and good luck to girl-child in her final year of high school!

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  2. Hope the Enbrel works well in controlling your sons arthritis! My daughter uses this and it has done the job for her. She was even in remission w/out meds for almost a full two yrs. She recently started back on it this July due to three joints flaring back up on her. Wishing you all the Best of Luck!

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  3. Fingers crossed! Just because it didn't work for young miss doesn't mean it won't be the ticket for the boy! ;). Good luck with the 2014/2015 school year!

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