Wednesday, November 26, 2014

Moving Forward

     December is less than a week away. Quite some time has passed since my last blog post. A lot has happened too, which is probably why it took so long to update.

     My son has had a clinic visit in October, not a lot has changed.
 His fingers look bad, I try not to stare at them every time I see them, but sometimes I can’t help myself. 

     A couple of weeks ago we were discussing the institute of marriage and how people usually exchange rings to show their commitment.  My son was wondering how he was ever going to be able to find a ring that would go over his knuckles without it looking like a bracelet around his finger…the things you worry about.

     Still many drugs…slowly we are trying to wean him from prednisone but we have a long way to go yet. Enbrel is his new weekly routine, he seems to be used to it, but I’m not sure if I see results yet. We shall be patience and see!

     He had the opportunity to play volleyball with the seniors team of his high school this season. Being a rooky and being the only grade 10 boy, he did not have that much play time, but he trained hard, played some games and had a fantastic time with his team and his coach. The whole team showed fantastic effort and great dedication, and completely unexpected ( for most of their opponents) they team became zone’s champions and they got to represent their school at provincial championships. I’m pretty proud of the entire team and thankful he did get this opportunity. It did show him that; yes, his arthritis is hindering him but will not stop him from doing what he loves. Now on to basketball, try –outs are on their way. Here’s to hoping his knees and fingers will be cooperating and he can enjoy a great season.

number 9


     Both my son and my daughter had an ophthalmology appointment the beginning of November. Thankfully they both had no issues, and since my daughter is no longer using plaquenil, and my son doesn’t need to be seen more than once a year, we are good to go for the next couple of months!

     Today my daughter and I made a trip to the Children’s Hospital again. Bittersweet, because it was her last official visit there, before her transition to adult care.

Last time walking these halls as a patient for my daughter.


     She is doing fantastic, no inflammation to be found, her back is doing much better, and another med is discontinued, good stuff! All she takes now is one shot of humira every other week…what a way we have come since she started her journey with Arthritis, 10 years ago….

     She’s working so hard and making me so proud. She has been conditionally accepted to the college of her choice, enrolled in the education program. She has her school, her job, her social life, and what most people don’t realize is that she has to work twice as hard as anyone else. She does it with grace and most days with a smile on her face, no matter what obstacles she encounters! ( Like almost rolling her vehicle and now having to drive with mom again...) 

     My “little” girl is as tough as they come, with all of her 156 centimeters and her 41 kilograms. She picked out her graduation dress already, it’s pretty stunning, but it will have to be altered!
I’m very excited for her to start the next chapter of her life, I’m sure she is going to embrace it with open arms and give it her all…..just not sure if momma bear is ready for it yet!


Friday, August 29, 2014

Plan D

     Summer is over, time to get back to school.
Looking forward to the routine, but am a little sad this summer has gone by so fast. Also a bit disappointed we got so little accomplished on the health front.

     After communicating back and forth between researchers, specialists and the pharmaceutical company, the trial my son was partaking in was terminated.  A mistake was made, not one person was to blame, just a couple of circumstances combined, some fine print that was overseen, some misinterpretation, some lack of supervision, whatever it was: we had to stop. What it comes down to is that the trial has not been performed according to the guidelines that were set and is therefore invalid. We can not start over because he has already been exposed to the drug; it’s in his system, so again, a “contaminated” baseline. Too bad, so sad, but we have to move forward.

     The hopes we had to get a good start and see some great improvement is my son’s joints were crushed too. A lot of our time, our doc’s time, a lot of people’s time just wasted, unfortunately.  We made 7 trips to Calgary over the break and we have not made any gains. In fact, we are back to the drawing board and have to start from scratch.

     On to plan D.

     We decided we would give Enbrel a chance. It has never worked for my daughter, therefore we initially skipped it, but now with Humira not doing what we would have liked it to do, and the Certolizumab  being discontinued,  we thought we may as well give Enbrel a chance, who knows!

"Hop on the bed and let's check out those joints."


     So….in the process of getting that going. Insurance has approved it, the syringes are waiting in the fridge, and now we are waiting for a nurse to come and give him training. A less painful injection than Humira, but the down side is that he has to take it weekly. 
  
     Next week school start. First day of school there are volleyball try-outs. He is really looking forward to that. I am not, with his hands looking the way they do….but I’m not going to deny him this. We shall see how it all goes. 

     There is no need to look back; we do need to look forward. I have to admit though, that I would have hoped this summer would have given us some positive energy to start the new school year off on a good note.
 
     This too shall pass and we will tackle the beast somehow, we will even do it with a smile on! We've

done it once, we can do it again!



Wednesday, August 6, 2014

6 down...



     August has arrived, don’t even know what happened to July! Summer break they call this; I am exhausted!

     The weather is nice, hot and toasty, with the occasional down pour and thunder storm.

     Since the beginning of July we have made 6 trips down to Calgary, with today being the most recent one.

     My girl had a checkup. She is getting really close to her transition to adult care. We found out today her current doctor will be following her to the “Yard” ( young adult rheumatology department) to help familiarize her with her new team of medical professionals and to help the team get to know her and her history. Again I am very impressed with the thought that is put in to all these facets. Hopefully this will all make for a smooth transition. Plus we are excited we don’t have to say good bye to our beloved doc quite yet!

     She was found completely clean (that’s what we say when there is no swelling found anywhere in her joints!) and because of this, yet another drug was scratched off her list! No more Plaquenil for her, all she takes now, to control her arthritis is Sulfasalasine and Humira. Nice deal, because since she was on plaquenil she needed to have her eyes checked by the ophthalmologist twice a year and now she will only have to go once a year! Still some stomach issues but we have a plan for that too.
In the mean time; I’m proud of my girl, she’s as strong as they come, in the cutest little package!

the pile of paperwork is my daughter's file, and I'm afraid to say this isn't all of it yet....


     For my son it’s a different story, we are not where we want to be yet.

     Our first appointment in July was to establish a baseline, from where we could start this “new” drug. Full body examination, all affected joints were registered, checked on range of motion, swelling and pain. Blood work was done, urine samples taken. Questionnaires filled in by both my son and me.

     Three days after this we went to Calgary again, for a visit with the allergy specialist.  He was tested for probably about 80 common allergies. None of them triggered a reaction so that is good to know. The specialist had a plausible theory for the reaction my son has had. 
Since his immune system was “in a bad mood” at the time, with the arthritis being so active, adding to that a flu shot and on top of that his first doses of Humira ( and secretly I am also thinking he may have had an insect bite on his head as well) his immune system got out of control and reacted in the way it did, with the welts and the swelling. 
Basically all the triggers worked like gasoline on a fire and made for a big reaction.  So not really an allergic reaction, just all the symptoms! Chances are he may never react like this again, chances are he may, only time shall tell!  Somewhat reassured.

     Another three days later and we went back to the rheumatology clinic for day 1 of the trial. Again: a complete physical exam, blood work, questionnaires and the whole shebang. When we were “all clear” we went to the medical day unit where he received his first injection of Certolizumab. We stuck around for a bit to see if he had any signs of an unwanted reaction, but he seemed just fine so off we went!

     We were off for a whole week before we had to go again! ( appointment number 4!) Just a check up this time, full exam, blood work and questionnaire, no shot this time! Easy breezy!

     Appointment 5 was another week later. Full exam, blood work, questionnaires and this time it was time for shot number 2. So off to medical day unit,to get his shot and we were out of there.

     Appointment 6 was today. We were able to bring the girl child too so it was two for the price of one today! Again a full exam was done. To be honest; so far I don’t really see improvement, but we shall stay positive and allow it more time! Blood work, urine sample, questionnaire, and off to medical day unit again. Today he did his own injection: man what a trooper! He had done the injector pens before, but never a syringe. No big deal for my guy; let’s just do it and get it over with. Also one to be very proud off! We were send home with his next dose, we actually have a month off! Maybe...

impressive looking labels

     After our long drive home the phone rang. The doc phoned with some disappointing information. The representatives of the pharmaceutical company that give the (very strict) guidelines for the proper execution of this study, have failed to let us know we were to discontinue a certain drug before we could start this study. No Sulfasalazine…. He was supposed to discontinue before the start of the study. We have stopped using them as per now and we will have to wait and see if they will allow us to start over, with today being the baseline….I’m not sure what to say. I have to admit that I am rather disappointed to potentially see all this effort from both our medical team and ourselves be in vain….


6 down…..the drain? 
We shall see, to be continued! 




Tuesday, July 1, 2014

"Summer Break"


     With the school year having come to an end, now is the time for a well deserved summer break.

     My daughter had a really good year at school and is now ready to move on to grade 12; her final year of high school. Exciting and scary, a year with a lot of lasts and firsts is laying ahead for her. She will have her last visit with the pediatric rheumatologist, and the first one with her adult specialist. She will start her last year of high school and her first year of college and so many more milestones are in her future. Pretty proud momma here, she’s accomplishing so much and seems to let arthritis get in her way of doing whatever it is she chooses to do. We have just finished off a study about how arthritis affects teenagers, she put quite a bit of time into that. She also wrote an essay that is featured on this site, for the world to read.

     We were approached through this blog and I’ve written a little entry as well:
 
My bunch!

     As for my son… He has had a great year in many ways as well. He has ended his 9 years at our little country school and is now ready to move on to the big high school in town.  A new start with lots of great opportunities to explore for him. Arthritis wise it hasn’t been a super year. Joint injections, starting with humira, scary allergic reaction…and no improvement to show for it.
 Hence the start of yet another new therapy.

Certolizumab.

      Just recently approved for pediatric use. He is enrolled in a study and as of tomorrow we will have to make many road trips to the Calgary Children’s Hospital. So truly; the “summer break” is really just a break from school. So far we have our first 3 appointments booked: July 2nd, 7th, and 10th. Many will follow; we shall see how to keep up with them.  Here’s to hoping this drug will work for my son. I’m hoping he will play sports for his high school, keeping my fingers crossed the frequency of his medical appointments and the arthritis itself won’t be an obstacle that prevents him from doing this.


     Tomorrow is the first step on our new road, our alternate route, but if it leads us where we need to go, any route will do! Besides, are the back roads not the most beautiful and surprising ones we can travel?!  


Monday, May 12, 2014

Oh May, Oh My.

     Off to Calgary it was again, for a “regular” check up at the rheumatology clinic in the Children’s Hospital.

     My daughter is still doing great. She is having some stomach issues and her back is bugging her at times, but her overall health is good. Her MRI results were as good as to be expected. Sad but true: her next clinic visit may be the last one at the Children’s Hospital. Very mixed feelings about that…. Grateful for the care she has received over the years and at the same time anxious about the upcoming changes for her.            The transition to adult care is a graduate one, with the pediatric clinic and the young adult clinic working closely together to make this transition as smooth and painless as possible. The unfortunate part is that this clinic also is in Calgary so traveling will be in my daughter’s future for the next couple of years at least.

entrance of the Children's Hospital,
 a hallway we have walked many many times

     Travel….unfortunately that will be a key component in my son’s near future as well.

      As expected we found that Humira was not doing enough for him. With his finger joints still extremely swollen, decided was that the time for yet another drug change has arrived. A few options were discussed.

     The road we are going to travel is an unknown one. He is to start a drug that just recently has been approved for pediatric use. It will have to go through a clinical study.  That’s where the traveling comes in…The first few weeks we will have to travel to Calgary once a week, if all goes well, we can then go to bi- weekly visits, followed by monthly visits and bi-monthly. The study will take a year, if all goes well.

      For now; his system needs to be flushed, so no more Humira as of the end of April. The new drug can be started in the first part of July. Hopefully we can get the bulk of the weekly visits done over the summer break. Both his schooling and my work would really benefit from not missing too many days…        
Because his joints are already so swollen, I’m scared that two months of no biologics can wreak havoc on his hands. If that’s the case, we will have to start with plan B: try Enbrel. Since it has been unsuccessful with my daughter, I’m not too hopeful it will do much for my son, especially since Humira isn’t doing the trick either.

     The name of the new drug is Certolizumab. I have yet to find someone who has experience with this one. If by chance anyone who reads my blog has some input about this biologic, feel free to share your thoughts with me!
 
     In the mean time my son will have to continue his prednisone, MTX, Sulfasalzine and Naproxen, let’s hope that does the trick for now. If anything I was really hoping the pred and MTX could be discontinued.  Those two I really hate with a passion, they impact my boy’s personality greatly in a negative way.


     For the rest; my son just wrapped up a pretty successful badminton season ( even though he walks of the court like an old man after a game) and is almost ready to move to the big high school in town, a couple of weeks left and then he will have his grade 9 farewell and is moving on.
 My daughter is doing great, almost done grade 11 and will graduate next year. Spring is finally starting to show itself and the days are getting longer and warmer. Hopefully summer will be upon us soon!

Friday, April 25, 2014

...Spring..? Are you there?

     It's been a while....May is fast approaching. March has come and gone and now April is nearing its end. Let's hope May brings us spring...it sure has been a looong winter this year!

     My son has not seen much improvement after his joint injections. My guess is that a med change is on the brink of happening....It would be a monthly infusion. He also has had an MRI done of his hands and we will hear the results of that at our next clinic visit, which is coming up shortly. I'm really hoping we can change his drugs regimen soon because he is not feeling well at all. He has to stay home sick almost once a week. That's a lot of school he is missing. He's been playing badminton lately and doing pretty good. Just sad to see him hobbling around like an old man after a practice or a tournament. Hoping for some positive changes soon because this is getting really old really fast!

     My daughter is doing pretty good. She's been having some stomach issues but other than that, she's in great shape! Her bi-yearly ophthalmology appointment just lays behind us and her eyes are clear. She has also had an MRI done. For the first time in ten years I was unable to accompany her to a medical appointment and that was not fun at all. I'm very thankful that some great people stepped up to help out. I hope I will never have to let either one of my kids go to any medical appointment "on their own".

     Our next clinic visit is coming up in the beginning of May, double date with both the kids AND their momma!

     I was approached by a local journalist to share our story to spread some awareness about JA. My daughter and I were interviewed by Jeffrey Heyden-Kaye, from the Ponoka News. I'm proud of my girl for starting to advocate for JA. I'm thankful for people like Jeffrey Heyden-Kaye to help raise awareness. It seems to me the awareness is slowly growing so that's super!

     I will post the content of the article on my blog, courtesy of the Ponoka News. Some beautiful pictures were also shot by Jeffrey Heyden-Kaye! We have also been approached by another person to help raise awareness, probably more about that in one of my future blog posts! For now I'll leave you with this fine article!
my girl and I

Family stays positive while dealing with juvenile arthritis


Seeing a child bent over and unsteady on their feet is not an easy sight for a parent but an estimated 24,000 Canadian children and teens live with the disease known as juvenile arthritis (JA).
In an effort to raise awareness, the Arthritis Society of Canada has designated March as Childhood Arthritis month. There is no cure for the autoimmune disorder and those afflicted with it have to change their whole lives around.
For the last 10 years, one Ponoka family has dealt with the issue and they took some time with Ponoka News to explain how they managed. Laeta Morskate said most people attribute the disease to old age arthritis, but when children have JA it is something different.
“In juvenile arthritis your over-active immune system is attacking healthy cells in the body and they can cause inflammation,” said Mrs. Morskate.
Her daughter Merel, 17, says her disease gets mentioned at least once a day.

“Everybody always asks me, ‘Really? I thought only old people got it.’ But they don’t,” said Merel.
JA is an aggressive disorder that needs to be treated in an aggressive manner, explained her mother. The disease is so invasive and treatments are strong that the family has a cabinet stockpiled with pills and syringes.

People suffering with JA take some of the same drugs used for cancer treatment. Doctors can administer steroids, anti-inflammatory drugs, biological drugs and disease modifying drugs.
It can last a person’s entire life but may go into remission. Mrs. Morskate has been told if it goes into remission by time a youth reaches 16 years, then it most-likely stays that way. In Merel’s case, she is in medical remission but must continue her drug regimen.
“She is now basically complaint free,” said Mrs. Morskate.
When Merel was first diagnosed she had to take steroids along with up to 20 pills a day. After almost nine years a working drug cocktail was found and Merel now takes three pills a day and gets a shot every other week. She administers a needle herself into her leg.

One of the reasons she took so many drugs is so doctors could find the right cocktail for Merel’s immune system.
To ensure her system is healthy, Merel goes for checkups every six months and blood tests every six to eight weeks. Mrs. Morskate says the drugs try to trick the immune system, but they also suppress it, if Merel gets sick, her immune system cannot manage a basic cold.
“We have had a full year where we had to go every four weeks,” said Mrs. Morskate.
Merel gets taken to the Alberta Children’s Hospital in Calgary and she has found the experience to be positive. “I don’t want to go anywhere else,” stated Merel.

Fighting JA while going to high school
Grade 9 proved a challenging year for Merel, who spent a lot of time at the hospital. She missed out on school days and struggled with her schoolwork, especially math.
Swollen joints, back pain and constant fatigue make learning a challenge, Merel was not only physically tired but mentally drained as well. Because of the disease, Merel has one leg that is shorter than the other.
“You can’t even learn, you’re just so focused on that,” she added.
An even bigger challenge for Merel was her mental discipline and focus during tough times. While this proved difficult, it made her stronger.
“I feel like I can understand people a ton better than the average 17-year-old, I’d say. Just because I’ve been through so much,” explained Merel.
She feels there is a mutual understanding with other people going through difficult situations in their life as well.

At some point in their lives, Mrs. Morskate said they had to accept the reality of JA but she commends her daughter for having strong mental capacity to deal with these issues while leading a relatively normal teenage life.
“She has a job. She has a boyfriend. She manages her own medication now. She tries to lead a bit of a social life,” explained Mrs. Morskate.

Passing on her experience
Merel’s brother Koen, 15, was diagnosed with JA in May. He is in the first phases of finding a drug cocktail that will work on him.
Koen takes eight to 10 pills per day and takes steroid shots, chemotherapy drugs and non-steroid anti-inflammatory drugs. It’s a big list that should get smaller as doctors narrow down the right group of drugs for his immune system.
“He’s doing alright. He’s exactly the way I was,” explained Merel.
She understands the everyday challenges Koen faces as a teenager. Now he must deal with his physical health as well but Merel is confident in his abilities.
“He’ll be fine with age, and once he gets more knowledge on it,” said Merel.
“It sounds weird but he needs a bit of time to grieve over what is not to be for him,” added Mrs. Morskate.

Raising awareness of JA
Both Merel and Koen have had fluids removed from swollen joints and steroids injected into their system.
“There’s just a lot of misconceptions. People do not know,” said Mrs. Morskate.
“Arthritis is not sexy at all,” she added.
The Juvenile Arthritis Society recently started to focus on how to help a young person cope with the disease. Mrs. Morskate says JA is constantly in the back of Merel’s mind and support groups are starting to sprout up around the country.
“When I was growing up with this, I didn’t know anybody else that had it,” said Merrel.
Mrs. Morskate suggests parents dealing with JA should find a healthy support group. She advocates a positive attitude in dealing with the issue. Being negative will not change the situation, she explained. “If you have to deal with a crappy situation, you may as well make the best of it."

“Merel has learned things and lived things and met people that she would never, ever have the chance of meeting if it weren’t for her disease,” she added.
Trusting their doctor has been integral in getting better. Merel suggests anyone dealing with JA should not leave anything out when talking to their doctors.
Mrs. Morskate has heard of home remedies and herbal fixes but has not seen the merit in those suggestions. She politely smiles and says thanks when people offer the advice but suggests trusting their doctor has proved the best for them.

Merel was not eligible for insurance
At the time of her diagnosis, she had four joints diagnosed with JA and insurance covers a determination of more than four. Shots given to Merel, and now Koen are called biologicals, or tumor necrosis factor blockers, which trick the immune system.
“The shots they take are $3,000 a month,” said Mrs. Morskate.
Merel’s doctor ensured she received help under a compassionate program where a pharmaceutical company must spend a portion of their budget on patients not eligible or who do not have the funding.
Koen’s drugs are covered by insurance because his initial diagnosis was different

Using Blogger to deal with the issue
The Morskates moved from the Netherlands in 2003 and one year later Merel was diagnosed with JA. Keeping the family overseas updated on their progress became cumbersome. Mrs. Morskate took to Blogger about four years ago to write about their challenges and as a means of stress release.
“To keep my own brain organized…And to try and raise a bit of awareness,” said Mrs. Morskate.
Merel and Koen have grown to accept their mother’s writing and she always respects their wishes when taking pictures. For Merel the challenge was wanting to keep her privacy, while at the same time raising awareness and keeping her family overseas updated.

her eyes....




Sunday, February 23, 2014

Venture in to February

     Off we went to Calgary again.

     Joint injections were on the program this time around.  A good thing because my son was really bothered by the way his finger joints were feeling. His feet and ankles are bugging him too. Pretty sad to see him walking like an old man after a basketball game.
   
      With some snow in the forecast we left early so we could take it easy in case we had to. Arriving half an hour early with pretty good driving conditions made for a decent start to our long day.

     Since there were quite a few joints they wanted to inject, it was decided to do it under general anesthetic. That meant no food and drinks for my teenage boy…don’t know if you've ever dealt with a hungry teenager; let me tell you, it’s not a walk in the park! 

hungry little big guy

     Drugs were ordered and picked up from the pharmacy. My boy changed into his fancy hospital pajamas and the waiting began. About two hours with nothing to do and nothing to eat!

the bringer of relief?

     He was wheeled to the “holding area”. The doc and the anesthesiologist came and marked off his joints and talked about the procedure. He was asked if he’d prefer an injection or gas to “put him under.” He chose gas. And off he walked, and my heart skipped a couple of beats.


x marks the spot
     I went to the waiting room and watched some Olympic speed skating, even caught a heat were the Dutch females placed for the finals in the team pursuit so that was kind of neat. Waiting wasn't fun though, not liking the fact I couldn't be there with my boy. 


     The wait was over, procedure was done and he was rolled back on to the unit to recover. A chalk white face and pink washed hands and knee were lying in a too small bed, with his feet sticking out. Poor groggy guy.  His knee, both his wrists and 8 finger joints were treated. His already big joints now look gigantic because of the injected medication.

pretty in pink


     A long journey home again and finally, at 7 pm my hungry person finally got to eat!

     Whether or not it was successful, time will tell. For now we’ll just wait and see. If it works: great. We can just keep doing what we are doing now. If it is not successful: the next drug will be introduced. No more humira, the next one will be a monthly IV. We shall see what the future holds.

     Next on the agenda: MRI of both hands for the girl child, MRI of both hands of the boy child, clinic visit with both the girl and the boy, ophthalmology appointment with the girl child, appointment with an allergist with the boy child, AND the dentist for both….hope to fit all of this in somewhere!