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!

sigh

despite this

                                                             

and this

and this

and this

                                                                         

we still get this

Sigh.....

counting down till Summer...

    

     It’s been a while since the last update. Life this time of the year just seems to be hectic and busy. We can see the finish line for this school year, but before we cross that finish line, we have a bunch of hurdles to tackle!

Despite the fact this was most definitely the year with the most doctor visits we have had so far, it was also the year where my daughter has seen the most effect from all the effort she puts in to keep living with her Arthritis manageable. She seems to have turned a switch in her head and decided that she cannot let Arthritis define who she is and how she lives her life.

     She is done her TB treatment; 2 pills less each day! We are also weaning her off of prednisone….that is where I am having some mixed feelings. On the one hand, I am excited about the fact that finally after more than 1.5 year she is pretty close to being “steroid free”. (Still need probably 6 more months before we are done the tapering.) On the other hand, every time we hit a certain number, she starts flaring again.  Even though I believe the Enbrel is working wonders, we are experiencing flares again….sigh.

     Just a week after her last IV, she complained about stiff ankles. A day later there was a swollen ankle that stuck around for 4 days…..not happy about that. Will have to bring that up with our next visit.

     Like I said, we have a busy time ahead of us, a good kind of busy, but never the less; BUSY. I’m worried this will cause more problems. We have some camping trips coming up , a busy school month and most weekends packed with activities. On the other hand, Summer coming up so many opportunities to get some extra rest in.

     In the mean time; staying positive and focus on what is going well. Like I stated in the beginning of this post; this year was a good year for my girl. I just wish she would stop growing up so fast.

Snowy Easter?

     Here we are in April, and when I look out my window it still looks like we’re in a winter wonderland. The snow doesn’t want to stop falling this year. I guess this is the end of the period of draught we have had the past few years!

     Scary to realize that we are approaching the end of another school year. My youngest is going to go to junior high and my oldest has only one year left on our cozy little country school before she  is going to the high school in town….sigh…I’m getting old!

     We are in between two IV treatments, and my daughter seems to be doing quite well. There was a bit of a flare in one of her ankles but that came and went without much troubles. 

Guess what, she even decided to join the badminton team and is entering a tournament this weekend. I’m so excited about that, not because I expect her to win but because she CAN participate. This has been quite the turnaround for her; basketball, volleyball, badminton,  last year she didn’t even consider trying. Her physical well being has improved so much and that totally helped her boost her mental state of mind too. Today she was recognized by one of her teachers for the academic challenges she is tackling now.

     Seems to me that the endless pills, needles and IV’s are finally doing something for her. Now here’s to hoping she can enjoy this period of “feeling okay” for a while!

     And about the snow…..really, how much longer can that keep going on? We must be close to being done with that and then SUMMER!!!!

OK, Spring, show yourself!

     It’s been a while, time for an update!

I have to say, the set back I described in my last update only lasted about a week. Even though the flares still happen, they seem to last shorter and that is a promising development!

     Another treatment was done the 22^nd of February , the next one is planned for March 25^th. The 6 monthly visit to the ophthalmologist is also behind us again, with no alarming results. The results of the MRI were also good.

     My girl is on the homestretch where it comes to her TB treatment; only a good month left. We are also very slowly weaning her off of prednisone.  Overall she’s doing quite well; much more energy and physically quite fit. Mentally there is much more spunk as well, what to me is the greatest blessing.

For the first time ever she was able to join the volleyball team as well as the basketball team and complete the season without too much issues. So very proud of her and happy she got to experience this!

Many good things are happening for her and she seems to really enjoy this break.

     ….the last few days she’s very tired again. I’m really hoping this has to do with the day light saving time or the change in the weather…I’m keeping my fingers crossed.

I can smell Spring, ready for it!

Oh, and don't forget; March is Juvenile Arthritis awareness month! Spread the word!

JINX...:O(

Okay....I guess I did jinx it.
My girl came home from school today with a gynormous knee....
We were disappointed but hopefully this won't get her down, she's been doing so good
both physically and mentally. Let's hope this is just a little bump in the road.
Will keep you posted!