This is what Ryleigh told me yesterday — that she is not giving up.
Six weeks ago Ryleigh started a “new” medicine, Thalomid. It is the same as the the thalidomide that was banned in Canada because of it causing severe birth defects. It took almost 6 months to get permission and the protocol completed for Ryleigh to try this medication. It is not covered by pharmacare or my extended health and is over $3000 a month. With Dr. Barker’s help the drug company was convinced to give Ryleigh compassionate release so we do not have to pay for it (at this point).
This medication has had only one medical study done (in Italy) with 30 children with severe Crohn’s disease. It had good results and we are hoping that it will have the same for Ryleigh. According to the research, the Italian children started to experience remission from 4-8 weeks. Currently, Ryleigh is not experiencing any relief.
Ryleigh continues to struggle with constant pain, fatigue, skin rashes, and swollen and painful joints. It continues to be heartbreaking for me but I am amazed by her.
We are in Vancouver this week as she has appointments and some tests. She is going to have scopes done again to see if they can see anything. Unfortunately, most of her pain is in the small intestine and the scopes do not work to see what the damage is. She is also going for a 2 hour appointment with rheumatology to hopefully get some help with the swollen and immobile joints.
I am inspired by Ryleigh’s renewed optimism and positive attitude. In my eyes, it seems like she has turned a corner in her management of this disease. Although she is not giving up on finding relief – she has decided to make the most of what she has now no matter what the circumstances. She tried to explain to me her energy as the power points on a video game. She has a limited amount of points for each given moment. If she expends these points too soon then she does not have the energy to do the things that she wants too – visit friends and family, play with our dogs, go to mall, go out for dinner…etc. So she banks as many points as she can so she can do these things. So, I am working on getting her some kind of mobility device (motorized scooter or chair) so that she can get outside and be more active. Although it seems easy – it is not. Paperwork needed to convince extended health that she needs it. Possibly need a different vehicle. Choosing the best device…I hope it does not take 6 months like her meds did.
We meet today with her GI doc – Dr. Barker. Ryleigh is convinced these meds are not helping so we are pushing for the next plan of action. I am looking into the possibility of a referral to Boston Children’s Hospital for a file review and possibly visiting there for a second opinion as they are the leading Children’s Hospital on Crohn’s disease.
So, we are not giving up.
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