...Out With A Bang!

    Another year coming to a close…and what a year it has been again. We’ve had a nice Christmas with our family and now the wait for the new year is on. Time for a fresh start!

    A couple of weeks ago my daughter and I went to the ER so she could administer her second dose of Humira in a safe environment. Despite the fact we “ran in to” a very rude and blunt nurse, she gave herself a shot and there was no reaction this time around. The first time around must have been a fluke, or her blood sugars were too low, I don’t know, I’m just happy she was ok!

    So a new chapter has started. I’m keeping my fingers crossed that this will be her miracle drug! The last day before our break we went to the Children’s hospital for another treatment. After a visit from the rheumatologist we learned that this would be the last IV! That was great news. I can’t say I’m upset about the fact we don’t have to do the monthly trip to Calgary, 15 months has been enough! Also, since we now started a new drug, we can stop giving her the chemo. My girl was excited to finally see some things go instead of being added! Next clinic visit will be in March…wow, can’t believe we get a break for 3 months!

    It was a big burden, those IV’s every month, but it also has given her a year where she was able to undertake more than I have ever seen her do in the past. It has boosted her self esteem and has empowered her greatly! I’ve “secretly” watched her, when she was playing volleyball, excited, being part of a great team, being normal. I have to say that I was quite emotional at times. For her to be able to take part the way she did; that was priceless and that is something no one can ever take from her!

    Wow, 2012 is just around the corner…I’m getting old! I’m quite excited to see what the future holds for us. We’ve seen a lot of misery happening around us, I’m hoping this New Year will be an opportunity for many to start fresh and optimistic.

    From my house to yours: wishes for a happy, healthy and prosperous 2012.

Good things are going to happen; stay tuned!

Ugh....

    Well, I guess we should start with the good news!

    My daughter’s friend has found her missing sister. We are so happy she is found safe and sound.

    My daughter had her IV again last Friday. The doc was happy with how she was doing so lowered the dose. Hopefully she will do well on this lower dose. If she does do well, the next dose can probably be done orally so NO MORE IV’s….potentially, keeping my fingers crossed.

    Last week my girl was supposed to get her training from a nurse to start Humira. The nurse had to cancel due to bad road conditions, so we rescheduled for today. I was a bit apprehensive about it since she has now been without a biologic for a week and a half.

    Nurse showed up and prepped my girl.

    Unfortunately it did not go well; she had an allergic reaction. The nurse told me later it was almost an anaphylactic shock. She was dizzy, lost her vision, her throat tightened and her chest felt tight. She was as white as a rag and had cold sweats, all of this with the needle still dangling in her leg. Luckily she never really lost consciousness, but it was close and pretty scary.

    As you can imagine; she’s quite shaken up by this all (and so is her mom). It also means that we will not be using this drug again, so, once again we are looking in to other alternatives.

Another day in the life of…..

    Really ready for a solution right about now!

November News

    Wow, time flies! We are in November now and today I woke up to our first day of snow. There has been a white day before this one; however we were in sunny Mexico so we missed out on that!

     Overall my girl has been doing quite well. She has been playing volleyball hard and she was able to play most games. The last few weeks she has had to sit out some and also had to stay home for a day or two since her energy was gone.

    A lot has happened since my last post. First of all, my girl got approved for Humira, using their compassionate program. We are going to start November 17. Hoping this will be the one for her! She had another IV treatment done; we are almost ready for the next one, next week! The Doc told us her joints are looking the best they have in a long time so that’s exciting! She is wearing contacts now and she looks GORGEOUS! So far she is tolerating them well and only once did she sleep with them so far!

     School is going well and both her and my son are having a great year. In social studies they were learning about the Canadian government and for their final project they made a rap about it, it’s pretty cool, they posted it on YOUTUBE, check it out! http://www.youtube.com/watch?v=qxKcHF-Zv4s

    With Volleyball they made it to the CWAJHAA (what stands for Central & West Alberta junior high Athletic Association…..I think!) so we have a few more exciting weeks coming up!

    We just came back from our little get-a-way; we went to sunny warm Mexico. It was relaxing, rejuvenating and definitely planning on doing that again! Mazatlan is where we went; the Emerald bay, pearl of Mexico, and beautiful it was. Enjoyed a beautiful catamaran trip to an island, where we had a fantastic lunch and had the best fish I ever ate, horseback riding (sort of!) and an exhilarating “Bananaboat” ride! Went zip lining, an experience that was both unforgettably beautiful and an adrenaline rush! We rode a Mexican limo and visited a tequila distillery. Swimming in the ocean, finding seashells on the beach, lying under a palm tree looking at the coconuts, enjoying the food and the good natured people….yup, life is pretty good! And then you come home and the next day there is that fluffy white stuff on the ground; reality check!

                                               View from my deck chair!

               The reason these rock formations are white is bird poop....honestly!

    My girl took her last (ever?) Enbrel shot in Mexico. Next week she will be trained for Humira. I’m expecting it to be similar to the enbrel shots, we shall see! Added bonus for her is that this one only has to be administered once every 2 weeks instead of twice a week. Flu shot coming up and IV too. Hopefully after this one we can start weaning her? She’s currently on 5mg of oral prednisone, with a bit of luck we can be done it by the end of this year, and then, fingers crossed, getting rid of the IV’s.

    On a concerning note, we found out while we were in Mexico that a former student of our school has gone missing.  My daughter is close friends with this young girl’s sister and we are very concerned about her well being. I will post a link, please check it out, hopefully someone will recognize her.

http://www.albertapolicereport.com/2011/11/09/rcmp-ponoka-investigate-missing-person/

    Please keep your eyes open for our friend. 

full throttle!

Another visit to Calgary lies behind us. So far it doesn’t sound like we will be able to stop with the infusions, but joints are clean and look the best they have looked in a long time AND we can go down another mg of prednisone, 5mg a day now. Also the lowest it has been in 2 years. Hope we can get over this crucial point without any flares!

About her treatment plan…we’re playing a bit of a waiting game at the moment. What I posted in my last post isn’t current anymore!

My insurance company has denied my girl for humira and remicade but has approved orencia for her. Doc thinks humira would be the best way to go, so now we are in the process of trying to enroll her in to a compassionate program. We shall be patience and wait and see what the future brings! 

Probably a good thing we have no clarity yet because we won’t be able to start before we’re halfway through November, since we have our little trip coming up! (Insurance will not cover pre existing conditions if they are not stable for the past 90 days or have had any changes in medication for this period of time…oh the joy of figuring this all out!)

A successful visit to the dentist also is in the past! Boy did she ever worry about that, but she did great and now thinks she was worried for no reason! Remember that for next time, girl, will make life a lot easier for you! (even a simple cavity can not be filled without some anti biotics in her system.)

   

Both kids are off to a great start of the school year. My son has to get used to the routine of junior high. Sometimes it is tricky for him to organize his brain and all the new steps and routines are hard for him, but he’s trying really hard and I’m super proud of him. My daughter is excited for her last year at this school and is already thinking about her farewell. Can’t say I’m equally excited about that, but I guess it’s all part of the process! 

Volleyball season is in full swing again and both kids are involved. So far so good and I’m extremely happy my girl feels able enough to participate the way she does. Keeps me running around like the Tasmanian devil but I'm excited to be doing that! We’ll just grab what we can for as long as we can!

Ophthalmologist gave her the green light for contacts so we have set up an appointment with the optometrist to get that done. I love the way her glasses look on her, however, she has such gorgeous eyes, I believe they don’t need to be framed by them!

Next treatment in a week or 3, flu shot coming up and keeping fingers crossed the busy season will go by without flares! There was a bit of complaining about being tired and drained going on for a bit, but I’m just going to ignore that!

We’ve had a gorgeous fall so far, with temperatures high above seasonal. Now here’s to hoping the snow will stay away for a month or 3 (who am I kidding!) so the drives back and forth to Calgary will continue to be “relaxing”.

To be continued!

Summer mode off, Fall switch on!

Wow, can’t believe Summer is coming to an end! Tomorrow my kids go back to school, they’re both quite excited! They’re lucky little stinkers since I have been back  a week already! We’ve had a bit of a slow start to our summer, weather wise, but the last few weeks have been nice. Tomorrow it’ll be raining so a good time to get back in to the routine!

Looking back on the summer, we’ve done a lot and it flew by. Last week we went for our semiannual check up at the ophthalmologist, all was clear so that’s good news! Next day it was off to Calgary for another treatment. Mentally she's doing great, physically we're not quite where we should be, considering all the medications she's taking.

In the mean time my daughter was denied for Humira ( I don’t think I feel too bad about that!) and a week or two later she was approved to start with Orencia. This is another biological and is given intravenously. Not sure when we will start this, her doc was not available when we went for her last infusion, so we’ll find out next go around.

We have a little family get a way coming up the beginning of November and we need medical insurance for that. Especially with my daughter being immune suppressed we can’t take any risks. A clause in the policy states that pre existing conditions have to be stable and medication changes cannot be done 3 months prior departure in order to be eligible for coverage. Another reason to hold of f the new meds for a little while! The things you have to be aware off when dealing with chronic conditions!

Went for a refill of our prescriptions and the pharmacist did not have all that we needed. He found a solution but told me the whole drug shortage thing is really starting to become an issue. I truly hope we won’t get in trouble at some point; with some drugs it’s just not safe to stop them from one day to the next. Keeping fingers crossed.

I’m glad to see my kids so excited for this new school year to start and hope it is going to be a fantastic year for them. Feel excited myself too, always love seeing the eager little munchkins coming in to their new classroom with backpacks that look bigger than they are, wearing their pretty new outfits! Let’s see what this year has in store for us!

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!

Arthritis is Unacceptable

     Well, we are good for another month!
We went to the Children's Hospital for another treatment. it went well, even the weather gods were on our side. My daughter had another IV, a visit with her specialist and an MRI was done,both her knees. All went well, no word on the MRI yet, but I'm guessing no news is good news! Next appointment is a month from now. Also a visit with the ophthalmologist coming up, where they dilate her pupils to check inside her eyes.

     It seems she is finally doing a bit better....have a hard time saying that out loud for I don't want to jinx it, but her energy level is way up and I hardly hear her about pain. Keep my finger crossed, and in the mean time we are really enjoying this period of relief! She's active, positive and enjoying school. I could get used to this trend!

     I have read this article on a blog posted on the Arthritis Society's wall. It grabbed my attention and stuck with me. It is slightly negative and harsh, but I find there is a lot of truth in it so that's why i decided to post it on my blog for you to read.
So these are not my words, but I do agree with most of it.

  Arthritis is Unacceptable.
I’ve been thinking a lot about this, especially as we enter a new year and I ponder once more what my hopes and dreams for my family are…Arthritis is Unacceptable. Unacceptable as in: adj. not giving satisfaction, inadequate, unwelcome, intolerable.

For me, the first time I heard the phrase, it was like hearing one of those carnival games where you use a sledgehammer to hit the target to try to push the little metal piece to the top to ring the bell. DING!!!! This was a loud ring for me. A bull’s eye. It resonated loud and clear! And it opened something in me….the part of me that sometimes gets sheepish, or apologetic when advocating or raising money for arthritis was split wide open – revealing a pissed off mom that wants to tell you that arthritis is SERIOUS. It deserves the same attention and respect as other diseases…. Yes, even other diseases that can be deadly. Because…. You know what? Arthritis can be deadly too!

Early last year, the world lost a remarkable person because of arthritis. Somebody who was strong, and funny, and had a heavenly singing voice – somebody who loved hockey and could play the guitar and was fearless. A compelling young woman who could convince people to sneak her outside for a midnight snowball fight on hospital grounds, or arrange a surreptitious tour of the gift shop storage room. Maggie had the world on a string and faced every challenge with a smile – even the battle that ultimately overcame her. For even though there were many health hurdles in Maggie’s path, it was a form of arthritis that proved too much… that had Maggie insisting that doctors keep some of her tissue for research because she wanted them to find answers so no other kids would have to endure what she did. It was arthritis that robbed her family of another Christmas with that sweet girl… and has them entering a new year without her. She was twelve years old. Does it get more unacceptable?

I have another uncomfortable secret to share. Often, when going through the process of diagnosis for juvenile arthritis… one of the potential outcomes parents get to chew on for awhile is Cancer. Leukemia was one of the diagnoses we were testing for when Caitlin was hospitalized with high spiking fever, swollen joints, white blood cell counts off the charts etc. When cancer was ruled out – we were so very relieved. This is very common and I’ve spoken to so many parents who have been through the same thing. One mother, though, had remarkable courage when she told me that sometimes, she wonders if cancer would not have been better. Before you judge, you should know that her son has one of the worst cases I have ever seen, and as a young adult, has already lived over 15 years in excruciating pain with no sign of relief in the future. He struggles with depression and mustering the will to live…. So please understand where his mother is coming from when she wonders if cancer might not have been easier. Either he would have been cured… or he would no longer be in pain. That is a powerful and courageous admission….and reminds me all the time of how unacceptable arthritis is.

Believe me! I am not trying to diminish the severity of any other disease. I am not trying to minimize the importance of any other cause, or discount the pain endured by people who struggle to fight those diseases, or the misery of those who lose loved ones. But we live in a world where some causes are just deemed more important. We live in a world where entire football teams wear specially made uniforms and shoes with pink ribbons. A world where celebrities wear colored ribbons and puzzle pieces, write books, do talk shows, and causes become “buzz” and money flows.

All the while there is still this prevalent misconception that arthritis is no big deal. There is still this ridiculously held notion that it’s just an old person’s disease, that everybody will get it, that you just learn to live with it…. That it’s OK…. That we don’t need to talk about it or raise money for it. Essentially, arthritis is not a cause. It doesn’t currently inspire action. It has no sense of urgency, or pressing importance that will draw people into doing something. It’s not a priority for people’s time, attention, or money. And for me, that is unacceptable. For my daughter, whose entire childhood has been shadowed in this stinking condition, that is unacceptable. For the 50 million people who live in pain, that is unacceptable.

It is not acceptable for people to give up their dreams, and their mobility, and their health. We should not tolerate willingly this loss of quality of life… this financial burden, this tidal wave of malady.

If you didn’t know, making arthritis unacceptable is part of the strategic plan and mission of the Arthritis Foundation. You might have seen the phrase a couple of times in the later part of 2010, and it has generated a lot of discussion.
On one of the message boards, somebody posted that it was counter-productive for her to focus on arthritis being unacceptable, because accepting it was the first step in her being able to get on with life. She had to make peace with the reality of arthritis in order to rise above it. Yes, I have arthritis but it does NOT have me. That made a lot of sense to me…. Because I am always trying to force my daughter not to use arthritis as an excuse. It is a reality that she has to live with… I often insist that she push through pain and go to school and I use the reminder that someday, she will have to do the same thing if she wants to keep a job. In a sense, I am asking her to Accept arthritis, as in: verb: to agree to take, to endure resignedly or patiently.

But what it boils down to for me is something like the serenity prayer….God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.
Do I believe that we can change arthritis? Do I believe we can find treatments and better means of prevention for osteoarthritis? Do I believe that we can potentially unlock cures for forms of auto-immune arthritis? Do I believe that fighting the disease, raising money, and continuously opening my big mouth can make a difference? I do. Arthritis is Unacceptable. And I want everyone to know it.