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 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....

1 comment:

  1. I really hope that your son finds a drug regime that is good for him, and I am glad that your daughter's eyes were clear. Your family inspires me to keep on looking for a diagnosis, my Rheumatologist thinks I may have JA but doesn't really know for sure. So I just wanted to say thank you for this blog, and I hope you continue with it :)