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!!!!

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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.

It's back to school for our hero!!!!  Hard to believe she is in Fifth Grade!!!!  This year definitely started out very strange.  This picture is from her first day of school.  This year she and her sister are doing a hybrid style school due to the Covid-19 pandemic.  Monday through Wednesday all of her school is done online and at home.  She has several Zoom meetings with teachers and then she has assignments to complete through out the day in ELA, Math, Science and Social Studies.  

Thursday was the first day back to school in person.  This was the best day of the week for our girl!  She was so excited to finally get back to the physical classroom after a 160 day "break" due to the pandemic.  This was also a big day as it was the first day in her new school in our new hometown in North Carolina.  So not only was it the first day of the school year but also the first day in the new school.  

We are very happy with the new schools procedures and handling of the current health situation.  The class sizes are very small (Mackenzie only has five kids total in her class when she is in the classroom).  The staff does a great screening before kids are even allowed into the building (parents/students must answer some health questions and the kids have their temp taken before they are allowed to get out of their car) and then once in the building there are markings for social distancing, all students and staff regardless of age/grade are required to wear masks, and they handwash numerous times through out the day.  Mackenzie said the kids have been great in following the rules/procedures and we couldn't be happier.  

This pandemic has definitly made our entire relocation to North Carolina very different from what we had imagined but we are making the very best of it even our return to school!  

Today is one of those really hard days.  Today Mackenzie has another check up with her Rheumatologist and things aren’t going well for her.  To top it off, thanks to this stupid pandemic only one parent is allowed to accompany her.  Last time we had to do the one parent visit it was for our final visit with our team at U of M and mom got to be the one to go.  Our first visit with our new Dr and team at Levine’s both parents were able to go because it was a first visit.  Now today we are back to the restricted visit and it’s dads turn.

Our last visit was just six weeks ago (not our normal three months) and at that time we were just two weeks into her higher dosage of Orencia and he was hoping that by today she would be showing some improvement. Unfortunately that is not the case. Over the past six weeks she has continued to deteriorate with extended periods of stiffness and pain upon waking in the morning to full out swelling and debilitating pain throughout the day.  She has been back relying on her crutches and wheelchair and is slowly beginning to withdraw from activity.

In so many ways this feels just like it did eight years ago when she was first diagnosed. Watching her battle this disease and the pain is heartbreaking.  Listening to her fears of what might be next steps in treatment is heartbreaking.  The inability to fix or take away her pain, the fear of the unknown, witnessing the battle she (and all JA Warriors) face makes us angry!  No child should have to live in pain (for any reason)!

Today we pray for a new plan that will begin to provide her some relief from the pain and for strength for all of us as we get through this visit both in person (Mackenzie and dad) and virtually (mom).

“They whispered to her ~ you can’t with stand the storm 💙 She whispered back ~ I am the storm”

Wow!  Can't believe it's been almost a full year since I last posted an update to this page.  I am so sorry for those that have followed this page that we haven't kept it up.  Ok, to be honest we were never really great at being consistent with updating but we also never left the page alone for a year either.  Well hopefully we can do better this year.

Speaking of year, not only is it a new year - Welcome 2022 - It is also year number 10 for Mackenzie and her battle with the disease and year number 10 of our relationship with the Arthritis Foundation.  

Then stay tuned for more exciting opportunities coming soon including a March Madness Bracket Challenge and more info on the 2022 Walk to Cure Arthritis!  

Thank you Everyone for your continued support of Mackenzie through all of the ups and downs, information overloads and information lapses, good days and bad, no matter what.  You will never truly know the full impact your love and support have on her and our familly!