How I love you, Sun!

     Wow, hearing all the stories about heat waves and draught all around us, I was starting to feel quite depressed with all the rain that has been falling out of the sky in our area. Rain, rain, rain, in crazy amounts, seemingly endless.  I know I am blessed to be working in the educational sector; I do get time to spend with my family in the summer months. This year however was lacking the much needed amount of sunlight necessary to recharge the battery and get ready for the new school year to begin. Not just for me, for the kids as well, specially my daughter, she needs those summers!

     Trying to escape the grey rainy wetness we decided to combine duties with pleasure. My girl was due for another IV treatment, so a road trip was in the picture anyways. My husband and son joined us for this trip to Calgary and after treatment was done, we went to go shopping in a new mall, went out for supper and spend the night in a hotel. After supper the kids went for a swim in the hotel and went to bed after that. We had a few rainy moments that day, but not too bad! The next morning we enjoyed a great breakfast and off to Calaway Park (amusement park) we went. The weather behaved and we had a fantastic day. At the end of the day we drove back home, only to enjoy a sleep in our own beds for a night, for the next morning we packed our little holiday trailer and went camping for a couple of nights. 

     We only had one thunder storm during our trip (what cost us the awning of our trailer, but oh well!) and the rest of the time the weather was gorgeous!  Amazing what a bit of sunlight can do for ones’ mind and body! Have a painful sunburn, but boy is it worth it!

     My girl’s treatment went well and it seems like we just have to keep going with this for a bit. Her rheumatologist examined her and still found swelling in her ankle, but overall was not unhappy. She informed us that one of the two options she planned for future treatment was denied by the insurance company (this drug is not commonly used with children and therefore they won’t cover the cost for it until she is 18). The next step is that she is going to apply for the other option, using a compassionate program, (this drug is also not commonly used with children) so this case will be individually evaluated, meaning, they will be looking at the course the disease has taken and how other treatment so far has failed. Keeping my fingers crossed for this one.

     Despite the few marvelous days we had, Arthritis was still there and I was a little sad to see how a few days of fun can cost my daughter so much energy and cause her pain. But, now we all have had our batteries recharged for a bit, whether physically or mentally ( or both!) we can all deal with it a little better again! A new mattress for both my girl and my boy helps too; “Mom, I had a heavenly sleep”!

     Next up;  dentist next week, ophthalmology appointment in 3 weeks and another treatment the day after that. Decreasing the prednisone by 1 mg again, keeping fingers crossed that we’re not experiencing another flare!

     Oh, and Sun, please stick around for a bit, I have missed you and I enjoy your company!  

     The beautiful art on this post was made by my daughter as a gift for her doc! I love her art, so bright and colorful!

political decisions..

     Treating my daughter’s Arthritis now has come to the point where it is more of a political issue. The drugs she is using at the moment have done a lot for her, but after a few flares here and there, we have discovered they don’t do enough.

     It is not recommendable to keep pumping steroids in her body, after almost 2 years nonstop, she needs a break from it. However, every time we come to a certain level, she starts flaring again, so we are forced to up her dosage. Tapering must be done very slowly,  it took us 4 months to go from 10mg a day to 6 mg a day. Now we are back at 8 mg a day so we have a long way to go yet….She is currently taking extra vitamin D, for steroids can compromise the density of the bones. (She is popping 14/16 pills a day at the moment, at 2 shots a week and 1 IV a month to that and you have yourself a “Glow in the Dark Daughter.”)

     Her chemo will most likely be upped again too and her anti inflammatories are also upped. Her 4 weekly prednisone IV is still happening, I thought that was a temporary boost, but it is 9 months on the go already. She isn’t heavy enough yet to up her biologic so now we are at a place where we should try a different biologic.

      There are two options left for that; another IV, starting at week 0, then again at week 2, 4, 6, and eventually every 8 weeks. This would be Remicade. The other option is another injectable; Humira, what has to be done once every 2 weeks.

     My girl now has to be approved by the insurance company, and the clinic nurse wasn’t very hopeful she would be approved. Pretty sad to see your child isn’t a person with a crappy disease anymore, but a case with a number and a price tag….

     On a positive note; summer is finally here! Both my kids had a fantastic year at school and are now enjoying a well deserved break. The lovely weather certainly helps!