A Year of Challenge and Change

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!!!!