A moment of hope…pictures do say it all…

lovely angels   Thanks to the wonderful team Kevin and Laurie at Wallace Studios who allowed us to have this moment of hope last summer when we had some time that was not focused on illness and health issues.  Instead we enjoyed our new back yard on a lovely summer evening.   I have it now placed in a spot in our new house that is visible to remind us what has been and will be again…no matter what. Ryleigh continues on a downward spiral…struggling with maintaining some sort of quality of life.  She spends most of her time resting in her room – sleeping or spending time on her technology.  She is searches online  for odd facts, information, quotes, and videos that inspire or just make her laugh.  Currently, she finds it entertaining to watch videos about others playing video games…I have to admit it is humorous as these are usually young adults and it becomes addicting to watch.  Ryleigh is now off her treatment of steroids (prednisone) and besides some weight gain…it did not help.  Frustrating…as it was always the go to med to get at least some relief. Ryleigh is now on a medication that she has had before.  It is a chemotherapy medication that she was taking orally – methotrexate. The medical team thinks because her digestive system is so compromised that it is probably not absorbing the meds properly.  So, the decision was made that she will need to have it administered subcutaneously – yes that means with a needle.  Which means — I get to be a nurse again and give her the needle.  It stings for quite awhile after she gets the med…but her ability to breath through the discomfort and deal with it all still amazes me.  The hard part is when she says “I wouldn’t mind the discomfort so much if I knew it was helping”. We have noticed no change as of yet and she has had 4 doses….once a week…for a month.  Ryleigh does not see her doctors again until the middle of May…seems like ages from now.  I have been in contact with her BCCH doctors looking at other options. One suggestion is a medication that is not available in Canada without special permission – Thalidomide.  It is the drug that was connected with severe birth defects and was taking off the market.  Currently, it used in a variety of other countries for treatment of leprosy.  As well, it is currently being used in Canada for a cancer treatment for adults over the age of 65.  I researched it and Thalidomide has been used for some patients who have had severe refractory crohn’s.  But again…mostly on adults.  The medication is another hopeful suggestion but I have to admit that we have been discouraged by all the other treatments.  We know that nothing is a cure but I am so hopeful that she can get back to how she is in the picture…painless, happy, and active.   I am spending some of my spring break – researching.  Getting information together for other types of treatment options to share with her doctors.  I am concerned that they have become complacent as Ryleigh has not improved and they are truly stumped.  So my job is to keep advocating with ideas, suggestions, and doing the exhaustive research that her busy doctors don’t always have the time to do. What I have found is that there is a specialist at Boston Children’s Hospital who is familiar with using Thalidomide and some other treatments.  The hospital will do a file review and provide a second opinion.  This may be the next focus for me to help Ryleigh…travel to Boston to have another group of specialists see if there is something else.  I will be discussing all of this with her BCCH doctors… but that is not until May.  So I continue the research….

3 thoughts on “A moment of hope…pictures do say it all…

  1. LOVE the picture! you ladies are always in our positive vibe shout outs! we are due for appointments in vancouver on May 19. if you guys are around the same time we should plan a meet up outside the walls of the hospital. email is tara_beeharry@shaw.ca

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