Mackenzie's Sidekicks

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.

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.

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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.

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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.

Last week Mackenzie had a check up with our Rheumatologist here in town.  During the exam the doctor did notice active arthritis and swelling in her right knee.  It is very hard to sit and watch the exam and hear the doctor to tell you that yes, the arthritis is active again.  We’ve gone so many months with nothing but great reports and no signs of active arthritis.  Then this.  Like the heading says, three steps forward, two steps back.

On Monday Mackenzie began a round of Prednisolone that she will be taking for eleven days in hopes of not only giving her relief from the swelling and pain, but also to knock the arthritis back to an inactive state.  Remission cannot occur unless the arthritis remains inactive for a year without medication.  Obviously we are not as close as we once thought we were.

Today Mackenzie is feeling better, moving better, and sounding better.  Those of us that don’t have arthritis and don’t suffer with chronic pain will never understand what she feels but what I do know is that is heartbreaking to watch her withdraw from activities because she either hurts too much to participate or she is too fatigued from coping with the pain to participate.

We have been told numerous times that Mackenzie likely does not know what it feels like to not have some level of pain.  Because of her young age when she developed the arthritis, her only memories are of some type of constant pain.  Her threshold for pain is probably much higher then that of a healthy child or adult so when she shows signs of pain we react because the pain is probably getting to a level that would bring a health adult to their knees.  What amazes us is that she rarely ever complains.  If she is in pain we have to figure it out from her behavior because if you ask her if she is hurting she will likely tell you no.  A four year old child should not have to live like this.

Our next trip to U of M is coming up soon and at that visit the doctor will evaluate how Mackenzie is doing after a short burst of steroid treatment and will then make a decision as to whether to let her go with just her Enbrel or add back her Methotrexate.  Of course our hope is that the steroid was enough to get her arthritis back under control and that we will be able to just continue with Enbrel alone.  If not that means adding back to her routine a daily oral supplement, another weekly injection, and anti nausea meds as the Methotrexate makes her extremely sick to her stomach.  We never truly realized just how sick it made her until we stopped it and saw how much better she ate and how she started to finally gain weight.  For those that think arthritis is no big deal…..think again.  It’s a horrible disease with harsh treatments.

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!!!

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!