. 

August has definitely not been the month of great progress for this girl with her JA.  Earlier this month we increased her dose of Orencia.  She had been in so much discomfort that we and her previous Rheumatologist believed this to be the next step.  So luckly when she was first placed on Orencia her Rheumatologist sent in her prior approval to the insurance for the higher dosage so we really didn't have a delay in receiving her higher dosed meds.  As you can see in the picutres she was extremely happy when the medication arrived.

Last week we met her new Rheumatologist here in North Carolina.  She really liked him and felt like he listened to her and made her feel comfortable even if she wasn't the most forth coming with her current level of pain.  No worries, the new Rheumatologist was extremely thorough and had no trouble finding all of her "bad" spots.  It was discovered during her exam that she has visibly active arthritis in both of her knees, and in five fingers (two on her right hand and three on her left).  Normally this would type of visit would end with a change in plans for her medications and overall treatment plan but not this time.  Right now he is choosing to keep her on the higher dose of Orencia, mainly because we were only two weeks into the higher dose and this medication is very slow reacting.  So for now his plan is to have her continue the course and return in six weeks (normally we visit the Rheumatologist once every three months) and see how she is after two full months on the higher dosage.  He also indicated that he would like to get her started in some physical and/or occupational theraphy as well once we get some control over the arthritis.  She is definitely back sliding in her overall battle and it's been a very hard thing to watch.

 

2020 is sure turning out to be a year and we are only half way through!  A year filled with numerous challenges and changes.  Almost so many it's hard to know exactly where to start.  So I guess as Maria in the Sound of Music might say, "Let's start at the very beginning, a very good place to start".

This year started out with the excitement of trying a new medication for Mackenzie.  In January we visited with her Rheumatologist and made the decision to switch her from Enbrel (a medication that she had been on for years with great results until recently) to Orencia.  Mackenzie had been wheelchair bound the majority of November, December, and January due to pain and swelling in her knees so we were not only excited but hopeful that Orencia would be our answer for her terrible flaring.  

January was also the start of the year of our really big adventure.  Our family was getting ready to move!  And not just a small move from one home to another in the same community or even the same state.  No, our family was preparing to move from Michigan to North Carolina.  Michigan winters are cold and snowy (average snow fall is around 76 inches per year) with even day temperatures below freezing in many parts for days together.  Night temperatures below zero.  This is not arthritis friendly weather.  Extreme cold and/or prolonged cold trigger flares leaving Mackenzie suffering or stuck inside.  Mackenzie had spent the majority of the cold, winter months inside both at home and at school during recess when all of her friends were outside playing.  It was very limiting and no life for a child.  So we did A LOT of research and settled on North Carolina where our future hometown averages 4 inches of snow and average winter temp around 48 degrees although colder weather does happen (but nothing like Michigan).

At the end of February we took a quick trip to North Carolina to visit our future hometown.  Our visit included a trip to the school the girls would attend, a few tours of apartment communities to find a home we could call ours for the first year or so after we relocated (we wanted time to find a new house and wanted to be able to see the various neighborhoods, etc before committing so renting was the answer for the first yearish).  We even took time for some fun and exploring including a visit to downtown Charlotte and the Discovery Place Science Center and a visit to the American Girl Doll Store in Charlotte.  

Little did we know when we returned home how much life would be turned upside down!  Within weeks of our return the country, and especially our state were in the middle of a pandemic.  The Corona Virus or Covid-19 was bearing down on Michigan and spreading like wildfire.  Everything was shutting down and going to into quarentine, including our schools leaving anxiety at an all time high and emotions at an all time low.  We were extremely concerned for Mackenzie and her health as we heard time and time again that those with compormised immune systems were at a high risk for complications and worse if they were to contract the virus.  This left us staying home, avoiding outside contact with others at all costs for what we thought was just going to be four weeks.  

As we got ready to enter into April we were quickly learning that everything we had planned was not going to happen as we had imagined.  At this time we got the call that the girls school would not be reopening for the remainder of the school year leaving the girls devestated that they would not be able to finish out their final year at their school or with their friends.  Even getting to see their friends in person to say goodbye was looking impossible.  The girls had invitations out to their friends for one last birthday celebration in which they were going to have a fun photo shoot done with their closest group of friends one weekend followed by a day at an indoor waterpark the following weekend....a celebration to make a ton of memories to carry to with them to North Carolina.  Instead both girls had quiet, family celebrations with no extened family or friends.  Definitely not how we imagined for sure!

In May our house went up for sale and we packed everything up.  June 1 was now officially on the calendar and set as our moving date!  We weren't going to let the pandemic stop our plans for our future and the chance to give Mackenzie a better quality of life.  It did however stop us from having our final Walk to Cure Arthritis with our Michigan Arthritis Community and that was another rough loss for all of us.  This was our family, our support, and we weren't able to see anyone from that family before we were to leave Michigan.  But despite not having an inperson Walk, our team still managed to raise almost $6500 towards a cure.  Take that Covid-19!

At the end of May Mackenzie made her last trip to the Mott Children's Hospital at the University of Michigan to see the her Rheumatologist and care team that has treated her since day one of her diagnosis.  At the time of the visit Mackenzie had still been experiencing small flares and we were seeing that her Orencia wasn't quite doing it's job and her arthritis wasn't yet controlled but she opted to keep on with her dosage and treatment plan hoping that it just wasn't up to full speed yet.  Leaving the hospital clinic that day was definitely emotional as we said goodbye to the amazing team that has cared for Mackenzie for eight years and has been her champion.  You know it's emotional when the doctor begins to tear up.

June 1st finally arrived and we did it!!!!  We moved 750 miles from Michigan to North Carolina!!!  The day before we left we had an amazing parade filled with family and friends that came by to see us off and share their well wishes.  Then it was time to go!  Mackenzie had a blast riding with daddy in the big moving truck we rented to move our things.  She was a great traveling companion for her dad and loved riding in the big truck she named Sunny!  

We have now been in our new home in Mooresville, North Carolina for almost two full months and are loving it!  It's definitely warmer then our Michigan summers but we are adjusting quickly.  Our community has a pool and the girls take advantage any time they can.  They are loving the abundent sunshine and many adventures we have been on since arriving.  And now as August approaches they are looking forward to the start of school.  In three weeks the girls will begin their first year in their new school but it won't be how they imagined.  As of now, the girls will attend school three days a week online and two days a week in person, in the classroom.  The days they are in the school they will be required to wear face masks and be asked to try and maintain six feet from everyone.  Definitely not an easy way to make new friends and get to know people but they are excited none the less and for that we are excited for them.  It will not be necessarily be easy but nothing about this life in the pandemic is.

Also since our move, Mackenzie's arthritis has worsened and she is back to using crutches on occassion.  As I write this blog post we received notification that insurance has in fact approved an increase for her in her Orencia and we are hoping that this is just what she needs to finally get her arthritis back under control.  She is also scheduled to meet her new Rheumatologist on August 12 and we hoping for a great connection so she can feel comfortable with her care.  

Definitely a lot of challenge and change in just over six months.  We hope to be better at keeping this site updated and also keep you all informed about all the ways you can help support Mackenzie not only with her dream for a cure but also in advocating for change in the way our country handles health care.  Thank you for your support and for sharing Mackenzie's journey with her.  Together we CAN cure arthritis!!!!

We have been very behind in updating this page and will post more on the why soon.  Promise!!!

In the meantime we would love to direct your attention to our Etsy site for a new addition.  With the pandemic greatly changing the way we all do things we wanted to not only be there to support others but also continue on our mission to raise funds for a cure.  So with that being said we would love for you to check out our storefront and consider purchasing your face masks from our store.  All proceeds from the sales of the face masks are going to the Arhthritis Foundation to support their mission of finding a cure.  We are being asked/required to wear face masks anytime we leave home so why not give to a great cause while wearing the face mask?   

To check out our store and see all that we have to offer simply follow this link: https://www.etsy.com/shop/MackenzieSidekicks

If you don't see a pattern/color/combination that works for you, simple send us a message and we will see what we can come up with for you.  Custom orders are accepted via message.

As always thank you for your continued support of Mackenzie and her journey with juvenile arthritis and her dream of a cure!

 

 

During the NCAA Basketball Tournament, it has become a tradition to fill out tournament brackets to see who can pick the most winners.

The 2020 Tournament begins on Selection Sunday - Sunday, March 15th with the First Tournament games being played on Thursday, March 19th and play continuing through until the Championship Game on Monday, April 6th.

Here's how it Works:

1. Sign up here: (https://www.pooltracker.com/join.asp?poolid=175587)

When do brackets have to be filled out?
*Between March 15 and Thursday March 19 at 12 noon ET.

The bracket will be updated with teams following selection announcements in the evening on Sunday 3/15.
The (4) play-in games on Tuesday and Wednesday are byes - no predictions required. Predictions are required only for the (63) games beginning Thursday, 3/19 at 12 noon ET.

Play-in game teams will initially be displayed together as 1-selection, until the winner is determined, at which time the losing team will be removed.

**Picks deadline is Thursday March 19, 2020 at 12 noon ET

2. Each bracket is $25 -- Remember, it's for charity :). You can pay by making a donation on our Team Walk Page https://events.arthritis.org/team/mackenziessidekicks (If a donation is not made by the Pick deadline on Thursday March 19, 2020 at 12 noon ET the bracket will not be eligible for the grand prize) *Not comfortable making an online donation? Please e-mail us at [email protected] for other ways to make your donation.

3. Scoring: Will be updated nightly.

4. Points are awarded by round. 1 point for each correct pick in Round 1, 2 points for each correct pick in Round 2, 3 points for each correct pick in Round 3, 4 points for each correct pick in Round 4, 5 points for each correct pick in Round 5, 6 points for the correct Champion

5. Grand Prize: awarded the participant with the most points: $150 gift certificate to Hotels.com and a $100 VISA gift card.

Be sure to follow our Facebook event page (https://www.facebook.com/events/601720787348108/) and keep notifications turned on as well for a couple of mystery prizes that we'll unveil throughout the tourney.

It's that time of year again where we begin talking Spring and of course, the Walk to Cure Arthritis.  We are excited to be preparing for our eighth Walk and this year the Walk will be even more bittersweet as it will be our last Walk here in Michigan. 

Late summer of 2019 we made the decision to make a change and relocate to North Carolina at the conclusion of the 2019-2020 school year.  Our decision was based primarily in the hope that the change is climate will be beneficial to Mackenzie and her battle with her arthritis.  Michigan has always been home to our family but for a child that is battling arthritis the brutal Michigan winters are extrememly hard.  The cold temperatures often tend to leave Mackenzie in active flares with swollen joints and a great deal of pain and when the real feel temperature dips below twenty degrees it's painful for her to even go outside which leaves her isolated from friends at school when they all go outside for recess.  In North Carolina these types of bitter cold temperatures are very rare and will allow her the opportunity for a better quality of life.  

This year we are asking everyone to please make an extra effort to join us for the Walk on May 3rd.  Becuase this is our last Walk to Cure here in Michigan we would love to see our biggest Team turn out yet and send Mackenzie off to North Carolina having felt the tremendous love and support of all of her family, friends, and supporters.  In recent years our team has drastically shrunk and it's been very obvious to Mackenzie.  We know life happens and gets busy but this year we would love to surprise her with a huge turnout, bigger then ever before!  Let's put a huge smile on her face and surround her with everything you've got!!!!

This years Walk to Cure will once again be held at Millennium Park in Grand Rapids, MI.  Onsite check-in will begin at 11:00am and the Walk will officially step off at 1:00pm.  There will be lots to do before and after the Walk so bring your families and friends!  The course will have both a 1 mile and a 3 mile option and the entire course is paved.  Online registration is open and it's FREE to register.  All participants need to register before joining in at the event.  To join our team, follow this link: https://events.arthritis.org/team/mackenziessidekicks and click the JOIN OUR TEAM button.  It's that easy!  

Let's make 2020 the year to remember!!!!