Drip

     Just came back from another visit to the Children’s Hospital. My daughter was up for another treatment. I’m totally okay with the 2 hour drive, usually I crank up the tunes and we’re there before we know it. Not in the winter though, and winter hit hard and fast this year. Hate it. Have to get up extra early to check the road conditions  and the weather forecast and then decide weather or not it’s safe enough to drive. For someone who likes to plan everything, these last minute decisions are hard to make. But anyway, I made the executive decision that it was safe enough to drive, so off we went. 

     Another prednisone iv. She was prepped and the iv went in. From there it’s just a two hour wait. Luckily there were some nice crafts for her to do while she waited (Can’t be to specific about them because they may end up as Christmas gifts!)

     Her specialist came in during the treatment; she examined my girl, what saved us another trip to the clinic 5 days from now. With this kind of weather that was a big relief. Next appointment is set for next month. Hope Winter will be kind to us!

     Not a big deal this treatment but I can’t say my daughter is in a very positive state of mind at the moment. Too much going on. School is demanding, she misses a lot, struggles to get through the day and always tries to keep a smile on her face. I don’t think any of her peers or her teachers realize what a struggle it is for her.  She doesn’t want to be treated differently in any way and usually she takes on more than she should. I guess  having to take all these meds every day, giving yourself injections twice a week and now iv’s once a month and not really seeing results don’t help either….

     I've learned that after every valley there is another peak. Let’s hope this peak is just around the corner!

looking for the beauty

     As a mom you it is hard to see your child not being well. You wish you could take over the pain, do some of the tests, take some of the needles and share some of the stress. Makes you feel helpless and frustrated and wish that sometimes you could do a little more than just being supportive.

     That’s why I decided to get a tattoo with and for my daughter. To represent how proud I am of her and how I wish I could do more for her. I chose to take the logo of the Arthritis Society, u cute little birdy. It represents more than my girl’s condition; her name is the name of a bird (in Dutch) and we also had a little bird on her birth announcement. I got it done in my favorite color; turquoise.

     So, I had set up an appointment with a tattoo artist ( Trevor Whelen) and kept it a secret for my girl. The day came and after school I picked up my girl. On our way to the tattoo studio I told her what the plan was and she couldn’t believe it. She had never thought I would ever get a tattoo. We went for supper first and had a great time chatting away, we were both quite excited about what was to come!I gave my camera to my daughter so she could take pictures while I got my tattoo.  I have to say I was a little anxious but truly, it wasn’t bad at all! (Thank you Trevor, for doing such a great job!)

prepping for my tattoo!

Now  it’s sitting there, that cute little birdy on my shoulder. Forever showing how proud I am of my daughter and Now how I wish sometimes I can do more for her.( And just to be clear, I explained to my son that this was for him too because we all deal with this as a family, it’s just my daughter who has the condition). This beautiful little piece of art also reminds me of the fact that there is always something beautiful to be found in everything, as long as you keep your eyes and your mind open for it!

still healing up a little bit, but this is it!

  

Worried Little Soul

     Sometimes we forget about what goes on around us because we are too focused on that one thing that is “in our way”.

     I remember the time where my daughter was just being diagnosed. We had many medical appointments where the whole family was involved. My husband, my son, my girl and myself , we were all in this together. It was in the summer when this all took place.

     In September the kids went back to school, all excited about what the new year had to offer. With the annual Terry Fox run coming up, the kids started collecting pledges and in school discussing the life of Terry Fox.

     That’s when I noticed my bubbly, happy, positive son started to change. He was quiet, moody and had trouble sleeping. Many nights he came up from his room, in tears. I would ask him what was wrong but he couldn’t tell me.  He had always been a strange sleeper, sleepwalking and all, but he’d never done this before. It lasted a few weeks and I started to really worry about it.

     Finally we sat down one night and it all came out.

He told me he had seen a video about terry Fox at school a while ago. Terry Fox was a good guy, he had accomplished a lot. He also, like his sister, had a sick knee. He lost his leg and eventually he died.

All this time my boy had worried about his sister dying. To him it had all made sense. If you’re knee is sick you can die from it.

     My poor little man had carried this with him for all these weeks. We don’t always know what goes on in these little minds and sometimes we forget that what makes sense to us may need some further explanation to our little people.

     It taught me to always be very clear and open about what was going on and answer all questions my kids had to the best of my ability. It also taught me what a caring, understanding and loving character my son has. Still hurts my heart when I think about the big worries my little boy had. This once again showed me that My daughter’s Arthritis truly is a Family Affair.

up to the present

     So, every 6 months a visit to the ophthalmologist, every 6/8 weeks blood work that needs to be done, flu shot every year, about every 4 months a visit with the pediatric rheumatologist and a whole load of pills every day. A lot of effort, but manageable. We were able to (with a few changes in medication here and there) keep her going for quite a while. In the mean time, some concerns about her growth came about and the doc decided to do some more testing, to absolutely rule out everything.  Another barium swallow…ugh…that was another tricky one. No results though. Her knees were bugging her again so another steroid injections was done. This time, the medasalom  (sp?) a drug that should help her relax and would make her forget about the procedure, had the opposite effect and made it a horrible experience for her. Thankfully the swelling in her joints went away for a while.

     Then, in November 2009 her knee started flaring again. Off to the doc we went. More changes in medication and she was also put on prednisone.  My daughter had a big trip coming up with her school. I wanted her to be fit for that. We tried everything but a few weeks before her trip her knees were humongous again. Doc decided we should probably drain them again, before her trip. And so we did. It went a little better than the last time, but still no fun. She went on her trip to Europe, with a bag full of pills and a pile of paperwork that would enable her to travel from country to country without problems. It was a trip of a lifetime, but my girl had a hard time keeping up. Thankfully she was so tiny, lots of piggy backs were given to her!

     Coming home, things did not improve. She was getting more pain and emotionally it was straining too. She was not able to participate in many after school sport events, what made her feel left out and unable. Constantly fighting to make it through the week and crashing in the weekend. After another visit with her rheumatologist we found out that 12 joints were affected now. Time for yet another approach; next step would be a “biologic”. This would totally knock out her immune system and she had to start wearing a medical alert bracelet. Before we could start with these new drugs she had to be screened for any pre existing conditions, which potentially could resurface once her immune system was suppressed. This was in the summer and my girl had decided that she wanted to get a little stronger so she would be able to participate in the sports teams in the new school year. Off to the gym we went, were she started exercising and trying to build some endurance.  Went well for a few weeks, then she got another major flare.

      In the mean time she had lung pictures taken and had a mantoux test done. Mantoux test came back negative, but the lung pictures showed some tiny spots. These spots could be little calcifications that can occur after being exposed to TB. Sigh…more delay before we could start the new drugs.  A visit to a contagious disease specialist was made. Another mantoux test was ordered and this time it came back positive. About 90% of all people will be exposed to TB at some point in their lives. Most of the time it stays dormant but since my daughter had to start with this immune suppressant drug, we could not take any risks and she had to be treated for TB. 9 months of pills. Added to her other pills…she’s on about 12 pills a day, each day, every day. Anyway, she had to be on her TB pills for at least 1 month before she could start her new drug.  

A month passed and the new drug was ordered. It’s a very expensive drug and I am lucky that my benefits will cover most of the cost. It is about $200 per 25mg injection. She needs 30 mg a week, so that’s quite the investment. A nurse came to teach her how to inject herself. Pretty scary stuff, but she did it and does it every week, all by herself, what makes me very proud of her.   

     After about 6 weeks we didn’t see results and went back to her doc. My girl by this time had a lot of pain, had days were she couldn’t walk without crutches and had no energy. She had to miss school and was starting to lose her spunk. Couldn’t sleep and if she did fall asleep, she’d wake up from pain in her back again. She was physically and mentally exhausted.  It’s a lot to deal with for a 13 year old. Sometimes it’s just too much for her. Doc agreed that we needed to do something, so after digging and examining and weighing all the options, she decided a prednisone IV may help. My girl had an enormous dose of steroids pumped in her body. Most of her joints are effected at the moment, I believe her hips and her shoulders are the only “clean” ones. The Prednisone iv seem to give her some energy and we are going to have to do a few more of those in the near future.

     So this is where we are now, next week I’ll take her to the children’s hospital again, so she can have another iv and hopefully we are at the end of our downwards spiral now, it’s time for some better times!

I’m also very proud of her for joining the volleyball team this year and playing a whole season! Keep going strong, girl, basketball is next!