Remission on Medication

This past Friday was our BIG trip to Ann Arbor and Mackenzie’s Quarterly Check Up at Mott Children’s Hospital Rheumatology Department.  At her visit we were told that she is now considered in remission on medication.  This is great news!  It also means the decision has been made to completely stop her Enbrel.  YIPEE!!!!!  Yes, there was a lot of celebrating being done after hearing this.  It is a great feeling knowing she won’t have to endure her bi-weekly injections or her quarterly lab work.  Of course the happiest one of all was Mackenzie knowing she no longer has to have any “pokes”.

What all of this good news does not mean….well first of all her status right now is remission on medication.  In order to be in full remission she has to go all the way until April 2nd of 2017 without any return of symptoms to be considered in full remission.  That is a long time from now but yet it is also a lot shorter then the almost four years she has been battling this terrible disease.   It also means that she is not cured.  There is no cure for arthritis.  Even if she is able to achieve full remission, Mackenzie will still have arthritis in her body and will always have to live with the knowledge that it could come back at anytime.

We are very excited by the fact that Mackenzie is doing so well and has endured so many treatments, doctors visits, physical and occupational therapy, and lab work like a real super hero.  She is an inspiration to us and to many that she meets.  Remission or no remission she and the rest of the family will continue to work, advocate and fundraise for the Arthritis Foundation so that one day we will have that cure!

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The face of happiness upon receiving the news that she no longer had to take her arthritis medications.

Illness and Flares

Unfortunately Mackenzie has caught the stomach flu.  Poor kid was up at least six times during the night and is still miserable today.  To add to her upset shehad to miss her favorite thing…school and the cherry on top, it’s Girl Scout Day and she is going to miss her Girl Scout meeting.  She is one very unhappy little girl today.  Hopefully this is a quick moving “bug” and leaves just as quick as it arrived.

To add to her not feeling well and missing out on her favorite activities she is also unfortunately experiencing a flare in her arthritis.  This is a part of this awful disease that she will most likely be burdened with for the rest of her life even if she achieves remission.  The flares occur even when the disease is under control or in remission because her immune system is working extra hard to fight the virus she is currently affected with.  Arthritis is an auto immune disease in which her immune system attacks her joints as if they were a virus or foreign element within her body that should be eliminated.  So any time she catches a cold or any other type of virus or illness and her immune system ramps up to fight the infection it also tends to go back and disrupt her joints as well.  It’s a vicious disease and a vicious cycle that she will most likely not outgrow.

Hopefully this is a short term set back and she will be back up on her feet again soon.  She is due her next injection of Enbrel this Saturday so we have to get her feeling better so she can get it.

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A lot of changes in almost a year….

We find ourselves once again in what we loving refer to as “Walk Season” as we gear up for another Walk to Cure Arthritis with the Arthritis Foundation.  This year the Walk will take place on May 7th and we will once again be at John Ball Park.  Mackenzie is already super excited about the event and can’t wait to see everyone in their orange shirts.

Since last year’s Walk, Mackenzie has experienced a lot of wonderful things:
* She went on vacation to Niagara Falls and Boston, MA
* She had a check up in June that showed no active signs of arthritis
* She started Kindergarten and LOVES it!
* She started her third year in gymnastics – this year she started in level A1
* She had a check up in September that again showed no active signs of arthritis and so we were instructed to begin backing down her medication. She started receiving her 50mg injections of Enbrel every other week instead of every week.
* She went on a long weekend vacation to Mackinac Island (her second favorite vacation spot…comes in right behind visiting Mickey’s House [aka Disney World])
* She once again was invited to participate in the Tribute to Excellence Dinner for the Arthritis Foundation as a greeter. She had a ball!
* She had a very wonderful holiday season (Halloween had her dressed up like a Minion, Thanksgiving was filled with lots of yummy turkey, and at Christmas Santa brought her a new Pooh bear)
* She had a check up in January that still showed no active signs of arthritis and so we were instructed to further back down her medications to 25mg injections of Enbrel every other week

And now here we are.  It is February and Mackenzie has been on the lowest levels of meds she has experienced since her diagnosis back in November of 2012 and she is doing amazing!  My heart just soars as I watch her grow, play, participate and enjoy childhood.  These things weren’t even possible for her just a year ago!  We have so very much to be thankful for!

As we get ready for the Walk on May 7th we will once again be hosting our Mom2Mom Sale as our “big” fundraiser for the Walk.  The sale will take place on Saturday, April 16th at Our Savior’s Lutheran Church from 9a to 1p.  There will be between 20 and 25 vendors selling infant and children’s clothing, baby equipment (car seats, high chairs, pack ‘n plays, swings, strollers, etc.), toys, books, games, and much more.  There will also be a Bake Sale and a Girl Scout Cookie Booth (Mackenzie will be there selling cookies so be sure to stop and say hello).  For more information on the sale or to register for a sellers booth please click on the Contact Us tab and send us a message.  You can also find a flyer with more information under the Events tab.

Over the months since the last Walk we have also been introduced to new families that have had a child recently receive a diagnosis of Juvenile Arthritis.  We have also watched as members of our JA family have struggled with set backs, numerous surgeries, being wheel chair bound, have siblings receive JA diagnosis’, have medication reactions and more.  As we celebrate the amazing progress Mackenzie is making everyday our hearts break for our JA families that are struggling.  For this reason we will always pray, advocate, fundraise, and generate awareness about this disease.  We will not stop until a cure is found!

If you would like to join Mackenzie at the 2016 Walk to Cure Arthritis please click on this link and then click Join Team.  She would love to have you come support her and Walk with her.  http://www.walktocurearthritis.org/grandrapids/mackenziessidekicks  (if you are unable to click on the link, please copy and paste it into your browser). We always have room for more Team Members.  It’s free to register so mark your calendar and plan to be at John Ball Park on May 7th to support Mackenzie and help us Walk towards a Cure!

Here are some images of the almost past year of Mackenzie as she has grown and finally experienced childhood as she should!

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Quarterly Visit to U of M

On Wednesday, June 24th Mackenzie had her quarterly check up with Dr. Hoetzel at U of M.  It was, in this moms opinion, the best visit yet.

Her appointment was early in the morning so we went to Ann Arbor the night before.  To the girls this is an “adventure” because we eat out and stay in a hotel.  We picked daddy up after work and made our way to Lansing for our first stop….dinner.  We had a good dinner at Cheddar’s in Lansing and the girls love the big aquarium so of course we had to check it out before we left.  Then it was on to Ann Arbor where we had tried out a new hotel, the Ann Arbor Regent.  Turned out to be a really great hotel for us.  The beds were comfortable and the staff was terrific.  Then it was on to Wednesday and the real reason for our travels.

Mackenzie had a mission in mind when she went to her appointment….she was going to “chat” with the Dr. about how much the Enbrel injections hurt.  The visit began with the usual routine checks, weight, height, blood pressure, temperature, current medication and allergy reviews and then it was on to the Dr. visit.  When Dr. Hoetzel did his exam including range of motion Mackenzie fought him for the first time ever and not because it hurt but because she didn’t hurt and didn’t want to have her legs moved all around unless she was in control.  The Dr. was very happy with what he found which was nothing!  No active arthritis!  Her strength and agility are visibly improving and she is feeling great!

Outcome:  We continue as we have been meaning we continue the weekly injections of Enbrel for another quarter.  In September we go back for another check up.  If at that check up she is still doing as well or even better then we will begin the process of weaning her off of her Enbrel.  In September she will have been a year with no active arthritis in her joints upon exam.  While she has had some flares he feels that they are not significant enough to be a sign that the arthritis is gaining strength.  He said that even though there is no active arthritis in her body she will potentially have some occasional discomfort at times (especially around big weather changes).  And to be honest I think we were told this way back at the beginning of this journey but these flares are still nothing in comparison to the pain she suffered from in the beginning.

This idea of weaning of the medication is both an exciting and scary thought for us.  It’s very exciting that she could finally be looking at getting off of all meds and gaining remission but it is also extremely scary thinking that if the process doesn’t work then we have no idea how long this may go on.

So for now we go on just as we have, continue to pray for a cure, continue to pray that she stays healthy and continues to do so well and look forward to seeing what happens come September.

We thank all of you for your continued support and prayers.  They are working so please keep them coming!  We couldn’t get through this without all of you!

Happy Birthday Mackenzie!!!!

Today our beautiful hero turns five!  What an amazing gift we were given five years ago!  There are no words that could truly express how blessed we were to be granted a miracle we named Mackenzie.  She is truly a beautiful little girl both inside and out.  She has a huge heart!  She is compassionate and loyal!  And she is our hero!

Mackenzie has taught us so much about love and laughter through good times and bad.  She has taught us about true courage and strength as she has fought this disease called arthritis.  Not many moms can say they gave birth to their hero, but I can.  She is an amazing little girl who is going to give the world a run for it’s money.  I can’t wait to see what the future holds for her.

Happy 5th Birthday Mackenzie!!  We love you so very much!!!

Bad Days vs. Good Days

Lately all of the posts here have been about this fundraiser or that fundraiser so I thought maybe it was time for an update on Mackenzie.  This time of year especially, Mackenzie will have good days and bad days and those can literally change in the blink of an eye.

This is what a bad day looks like.  The past weekend we had been experiencing near record cold here in Michigan so we had been keeping Mackenzie in the house over the weekend to avoid too much trauma from the cold.  Unfortunately yesterday she was still on Winter Break and I had to go to the grocery store and that meant Mackenzie and Paige were both in tow.  It was cold.  Not as cold as over the weekend, but cold none the less.  We drove to the store and both girls walked from the van in to the store.  Paige of course was ready to shop.  Mackenzie on the other hand was moving slow and it took her the better part of the time we were at the store to start feeling better.  Then it was time to leave and the girls walked from the store back out to the van.  Paige hopped right in while Mackenzie struggled to get in.  When we got home it we had lunch and then Mackenzie crawled in the chair, pulled the blanket over herself and stayed just how she is in the picture above until almost 4p when it was time to leave for gymnastics.  She got to gymnastics and was feeling a little better but I noticed as she stood in her leotard and waited to go in that her right knee was swollen.  Gymnastics seemed to help with the swelling and she seemed to perk up because of it, which we are thankful for.  After dinner it was a soak in a warm tub and off to bed for her.  It was a rather quiet night overall.

And this is what a good day looks like.  This morning Mackenzie woke up like a whole new kid.  She was feeling good, bouncing around the house full of energy and excited about getting back to preschool and going out for dinner tonight for the fundraiser.  You would never know looking at her this morning that she struggled to get out of a chair yesterday.  Arthritis is an unpredictable and uncompromising disease.  And to look at her you would never know she has or does suffer for it’s affects.  Just look at this picture of her beautiful, smiling face.  You would never know to look at her that she was in pain less then 24 hours before it was taken.  We are extremely thankful for the support, prayers, and love she receives from everyone around her and everyone that has met her.  That is what gets us all through and helps us get through the bad days so she can enjoy the good ones.

Quarterly Check Up

Mackenzie had her quarterly check up with her rheumatology team at the University of Michigan Mott Children’s Hospital.  Overall the check up was good.  At the time of her examination she had no signs of active arthritis.

The Monday before Thanksgiving Mackenzie had one of the worst flares of her arthritis that she has had since getting it under control last Fall.  The fact that we had close to a thirty degree swing in temperatures outside and she was coming down with a respiratory infection really combined to create the flare.  On that Monday her fingers swelled to the extent that she struggled to play with toys easily and she spent the better part of the day outside of school sitting curled up in the recliner snuggled in a blanket.  On a positive note the swelling went down with 48 hours and she was in less pain.

By the end of the week we had her in to the pediatrician to have her lungs listened to as her cough had progressed and we weren’t sure she was getting any better.  A lung x-ray showed that her lungs were clear so she just had to give the virus time to work itself out of her system.

Because of these events the rheumatologist said that she will most likely just have to continue on her Enbrel for a longer period of time as this recent flare is an indication that the arthritis is for the most part controlled but not yet in a state that resembles the start of remission.  We go back in March for another check up and we’ll keep you posted.