Tuesday, June 11, 2013

Total & Complete Healing

Mireya had a great appointment this past week.  Her counts are soaring and holding beautifully.  The best news during that appointment was the results of her chimerism test.  The chimerism testing gives us a specific picture of the cellular composition of the body.  For many months Mireya's was between 30-40 (higher than we were comfortable with) and then sitting consistently in the low 20's.  We had come to the realization that perhaps the mix of her cells and Jalen's cells would just co-exist and stay around this point.  The latest test showed that Reya's cells were 'undetectable' *praise break*. The Head of Peds/Hemoc said when she saw those results pop up on the screen she was 'speechless'.  This was a greater outcome than she expected for Mireya!!!!!  So to quickly put this in perspective, if you recall when Mireya was taken off her immunosuppression meds following her first transplant, there was a small percentage of her own cells that remained in her body which were not destroyed by the chemotherapy.  Those cells re-emerged with a vengeance and started destroying all the cells in her body, resulting in the dire need for another transplant (thank you Lord for Jalen!) Those cells no longer EXIST in her body.  This is what we've prayed, trusted and believed God for.  The child with the issue of blood...totally and completely healed. God is so faithful!!!!  ALL things are possible for them that love the Lord.  Don't give up hope!


We could not have gotten to this point or place without the love, support and hearts of many....for that we are eternally grateful.  There is no one I could have walked with or made it through this journey with, other than Quentin.  Support, love, tears, laughter (to keep from more tears), a covering.  We drew strength from each other, we stood 'together' in faith, we prayed long and hard 'with' one another and 'for' each other through it all.  Our faith has increased to another level and we've personally been touched by the power and unity of people (family, friends, church family) and community. Thank you for standing with us, for following our plight, for all that you've done to lift our burdens and to add joy and happiness along the way (this blog has been viewed and shared among 57 different countries)....simply amazing.  We are inspired and extremely proud of the strength of our children (those little lives we fought so hard and endured so much to bring into this world).  We continue to pray and trust God with all he has for each of them....our blessings....our gifts.


Our dreams are big, our future is bright, our desire to serve and bless others has continued to grow.  God knows our hearts. So now we recover, we reflect, we revisit all the things we've desired to do that have been placed on hold and we start filtering those things back into our lives.  Simple pleasures to enjoy and some long awaited things to plan for.  Mireya is super excited to finally get to do something she has not been able to do for over two years.  She received the clearance to go swimming, so this summer...IT"S ON!!!!  We will return to clinic in about month or so for our one year visit and exam.  This will include some extensive testing that will provide the necessary benchmarks as we transition into the maintenance phase of treatment.

Words cannot express our happiness, appreciation or thankfulness.  Thank you for walking with us, thank you for trusting with us, thank you for praying with us and believing with and for us.

Matthew 10:27 What I tell you now in the darkness, shout abroad when daybreak comes. What I whisper in your ear, shout from the housetops for all to hear.  

We made a decision to trust the word of God, despite what it 'looked' like or 'felt' like. Our faith reassured us that Mireya's health would be restored and after almost two and a half years of a life in limbo I'm shouting *in my loudest voice ever* GOD IS SO AMAZINGLY AWESOME (yes all caps is appropriate here)!!!

Tuesday, May 7, 2013

It's a Celebration

Beauty Station Visit

Which camera are we looking at?


In all the fun upstairs, Jalen has lost his shirt and tie

Dancing with Sidekick 

Daddy and his Princess

Three Amigos..Jalen found his shirt and a cool hat.

It's a Wrap....Good Night

Every day is a celebration.  The Heroes Ball was the first of many celebrations. #TeamBolton had so much fun.  It was a incredible evening with an amazing group of people coming together to raise awareness and funding for Connor's Heroes.  It's hard to put into words want Connor's Heroes has meant to us over the last two years.  The calls, visits, love, support, events, programs and opportunities to create memories and enjoy 'fun' moments as a family have been priceless. Connor's Heroes is an organization that understands how illness alters the life of the entire family, coupled with the challenges and struggles that accompany balancing life and treatment. I want to do my part to ensure they are able to continue touching and reaching the lives of families touched by cancer and life threatening illness.  Be sure to visit www.connorsheroes.org to see how you or your organization may be able to support the vision and mission.

Red was sort of our family themed color of choice.  I chose red because it was a statement of conquering the issue of 'blood'.  Mireya choose to wear white, which was very fitting. The little girl with the 'issue of blood', washed, cleansed and walking in victory....nothing but the blood of Jesus. It took faith and determination for the woman with the issue of blood to receive her healing. She said 'if I can just touch the hem of his garment, I will be made whole'.  This has been our stance and prayer for over two years, that Mireya would be made whole, that her health would be restored without issue.  We're thankful and grateful that through it all...the good, the bad and the questionable that God has carried and seen us through. We had no control, but our faith told us to hold on and trust God. Don't stop believing.....hold on to the promise.  Mireya has three months left in her active treatment and she is doing tremendously.  

What can wash away my sin?

Nothing but the blood of Jesus;
What can make me whole again?
Nothing but the blood of Jesus.

  • Refrain:
    Oh! precious is the flow
    That makes me white as snow;
    No other fount I know,
    Nothing but the blood of Jesus.

Saturday, April 20, 2013

Celebration of Life


Life is so precious...celebrating this day and enjoying the ability to wrap our arms around our sweet girl, see her smile and enjoy another birthday.  Thank you Lord!

Thank you for the calls, texts, cards, and gifts of love.  A very special 'thank you' to Michelle's Cakery Bakery for a BEAUTIFUL one of a kind creation for our Warrior Princess.  Reya LOVED her birthday cake and goodies, she especially loved that the side towers were individual push-up cake pops. You are amazing and so gifted.  Thank you for making this day even more special!
 
 



Tuesday, March 26, 2013

Heroes Ball

Connor's Heroes is gearing up for their 3rd Annual Heroes Ball.  Mireya will be participating this year as a Hero. We all know there are two heroes in the family, our 'Warrior Princess' Mireya and our 'Super Hero Donor Brother' Jalen that we are so proud of.

 Each of the children worked with local Artists this week at the Glave Kocen Studio to create #teambolton masterpieces that will be a part of an amazing silent auction.  It will be a great time to come together to raise funds and awareness for this an amazing cause, but also to celebrate with us.  We have so much to be thankful for. Mireya is going to love getting all dolled up for the evening.


For additional information and tickets, please visit Heroes Art Ball . I personally invite each of you to join us.  We would love to see as may familiar faces as are available that evening.  Thank you for your love and support and support of those that have loved and supported us.

Saturday, March 16, 2013

A Bum Wheel


My week has consisted of being stretched out on a sofa with restricted movement, slipping in and out of a painkiller haze. So thankful for a husband who has taken 'extra wonderful' care of me, for my family and friends that have stepped in to be of assistance when needed.  It's been rough.

I had hoped to never have to endure another knee surgery, but this past week I had my sixth knee surgery.  Five scopes and an ACL reconstruction (attributed largely to my love of sports). This go round I had some meniscus tears to repair, along with some clean up to get done.  That was the plan until they got in there and saw the complete madness that has been going on since my last surgery.  It was a lot worse than originally expected and required a bit more to address. There were issues that will definitely affect the stability of my knee going forward and the things I'll be able to comfortably do.  I have a follow-up appointment to discuss a lot of those points, but for now...it's quite a challenge.

I'm thankful for mobility and use of my limbs. Praying for a swift and speedy recovery.  Also believing for a plan that allows me to remain active and maintain the quality and fulfillment of activities I enjoy.




Thursday, March 14, 2013

Sharing & Caring

Writing..Sharing..Speaking and Connecting...several things I'm extremely passionate about.  If I had to add a fifth, it would be 'Serving'....let's just add that because that is the essence of who I am.

I've enjoyed speaking on behalf of the many organizations we love and who have loved and supported us over these last two years (Faith and Family Church, ASK, Connor's Heroes Foundation, Starlight Foundation, Make A Wish Foundation, Give Kids the World, Children's Miracle Network ,Children's Hospital of Richmond) and the Miss Chesterfield Organization.

I love sharing our story, the goodness of God and the collective beauty of the human spirit.  As a result, I believe it has become a part of my mission and assignment to educate and bring awareness, participation and partnership to Organizations that are making a tremendous difference in the lives of others.

I've had the pleasure of partnering on several occasions over the last year with Children's Miracle Network and Children's Hospital of Richmond to speak with/to their local and national partners in an effort to allow these partners to 'see' and 'hear' the difference they are making.  As a result other avenues and opportunities have been birthed or opened up.  The Foundation contacted me last week to share they are launching a new group starting with #TeamBolton.

an excerpt from that message...

"This spring, we will initiate a new group within our Foundation and we’d like to begin with you. Families with Heart will be a group of involved, passionate and motivated patient families who want to continue to be involved and support our efforts to help CHoR through event participation, story-telling and at times, speaking opportunities"

I was truly humbled to receive this.  Don't ever underestimate the 'Power of One'...how far reaching one voice, one experience, or one decision can make or the impact/imprint it can have.

Ambassador.Champion.Advocate.Spokesperson.Supporter...stay tuned for more!






Tuesday, March 12, 2013

Illness & Revelation




 It's been so beautiful to witness Mireya living and enjoying life.  There are days I'm overcome with emotion at some of the simplest discoveries.

We had the opportunity to hang out with some awesome families from clinic a few weeks ago to attend the Circus.  The kids were looking forward to a special tour that was lined up for the afternoon, a dinner and then back to the Coliseum to enjoy the Circus.

The tour was amazing.  We had the opportunity to spend one on one time with the head Clown in Charge, some of the featured animal acts and enjoy the allure and fabulosity of all things circus.  It was really special to watch Asia, the elephant paint a lovely photo for the Connor's Heroes kids, but even more exciting to watch her gleefully gulp down her favorite treat (a whole loaf of bread).

We walked over to Gibson's Grill to enjoy the lovely fare they had set up for us.  It was so funny to see the kids go for the high chairs (bar stools) at the bar and order an assortment of juices and sodas.  The food was very tasty.  Midway through dinner Mireya was dragging.  She mentioned that her head and stomach were hurting.  I felt her head and she seemed to be fairly warm.  Hmmm...I've been out of the 'on edge over fever' for quite a while, so I did not have my thermometer on hand and surprisingly neither did any of the other Moms.  I became concerned the more I watched her demeanor and activity change, but she absolutely did not want to leave the 'Greatest Show on Earth'.  I decided to contact the First Aid area of the Coliseum to see if I could get here temperature taken. Low and behold a very nice Firefighter arrived within minutes to our location registering a 101.6 fever.  After calling Peds Hemoc, we were instructed to bring Mireya to the Pediatric ER to be looked at and for counts.  We decided to allow Jalen and Kinley to stay with the group and enjoy the show because ER visits are always so long.  Mireya decided she wanted Daddy to stay with her in the ER. So thankful for technology which allowed me to return to the Coliseum, keep track of Mireya's status while Jalen and Makinley enjoyed the remainder of the show.  Long after the Circus was over we were still in the ER making sure Mireya received the care and medications she needed for what appeared to be a viral infection.  The greatest feeling was receiving her counts and seeing that they were right where they needed to be.  Her white count was even elevated a bit, showing us that her bone marrow and body were doing exactly what they should when fighting against illness.  Jalen was quite anxious when we arrived because he thought he was going to have to 'do something' again to help his sister.  After hearing those counts, I looked at Jalen and gave him a 'high five' and a big hug...those SUPER cells are working beautifully.  It was a long late night, we didn't get home until close to 1am.

Through what 'appeared' to be a setback, God showed us beautiful counts, a body on it's job and fighting for wellness.  We're thankful this was something that could be easily addressed and happy for the revelation in the midst of it all.  This is definitely a win for #TeamBolton.