Campus & Community ~ Changing Lives

#TeamBolton & VSU President Dr. Keith Miller

Be The Match Team

Lovely Ladies of The Links Inc.

 

We spent some time this morning participating in a cause and effort very dear to our hearts.  I've blogged several times about Be the Match, an organization transplanting hope into the lives of individuals and families in need a bone marrow transplants.

My husband oversees Web and Technology Services at Virginia State.  The Drive was scheduled at the University to benefit a local 12 year old boy diagnosed with Sickle Cell Anemia in need of a transplant.  Without hesitation, we both knew we had to actively participate.  It all starts at the top....VSU President Miller arrived to help kick-off the drive and show his support of this campus and community partnership.  The Petersburg Chapter of Links Incorporated was on site to volunteer and help facilitate the process, along with the Be the Match Team and representatives from a local Sickle Cell Anemia Organization.

I'm believing that the VSU community will continue to show up and respond to this event today. Finding a match in my own household saved my daughter's life and I want to help those in the same situation have more donors available.  Please visit http://marrow.org/Home.aspx and join the registry or see how you can become involved with this organization and potentially change the life of this little boy or someone else in need of a bone marrow transplant.

Magnificent Grace

Five pictures worth a thousand words each and more.  So thankful for the grace of God that kept us in our right minds and with a measure of peace in the midst of a situation where we were often overwhelmed.  In the words of Marvin Sapp 'never would have made it without you'....we felt powerless, but not without hope, knowing God is/was able to turn our situation around in an instant.  The manifestation was not instant, but we kept trusting and believing and as a result, lives were touched and our faith increased exponentially.

We walk by faith and not by sight ~ the things we've seen and experienced over these last few years have given us a greater appreciation for life and those in our lives, but also showed us to keep things in God's perspective (what does God say about my situation) and to never, ever give up hope.  Mireya is our Warrior Princess, our son our Hero.  Every time we see this beautiful smile and think of his selfless love, it reminds us of God's love for us.  Thank you Father for your faithfulness towards us!!!!

Exodus 23:25 And ye shall serve the Lord your God and he shall bless thy bread and thy water and I will take sickness away from the midst of thee.

The Difference a Year Makes

 

One year....365 days.....ups, downs, tears, joy, regrouping, reclaiming, but best of all.....rejoicing!!  We've reached a major milestone, our one year appointment. It's hard to believe that just one year ago we were being admitted for our second bone marrow transplant.

In the Clinic, I met a few parents new to their diagnosis and the routine.  The Fishbowl was filled with kids receiving chemo therapy and transfusions.  I was immediately flooded with thoughts of the two and a half years of that rotation.  I encountered a parent overwhelmed with concern as their Medical Team gave them the news that a Bone Marrow Transplant is their next viable option.  We had moments to talk and embrace, but I look forward to being able to share (from the other side of the coin) our experience to help prepare and align their expectations.  My heart was also heavy as I noticed the frailty of life in a few of the young patients who have been fighting these illnesses with all they've got. I sadly learned mere days after this visit that one of those precious lives would suffer no more.  It's unimaginable and my heart grieves with this family. 

Prior to this appointment we'd received a letter that the Head of Peds Hemoc would be leaving VCU.  Reading this letter made us sad. Not sad for ourselves but for the hospital.  Dr. Godder is small in stature, but very matter of fact and she shoots it straight.  When your dealing with life and death of a child, you want 'shoot it straight' and give me all the variables (at least we did)!  This woman is a wealth of knowledge and wisdom.  What are the odds that one of the best Physicians in this arena would be 'in place' during our diagnosis and active fight to partner with us and be the overseer of our daughters care? We're sad to see her go, but are happy she'll be closer to her family and continue to be a major force and resource doing something she loves...."bone marrow".  It was bittersweet to have our last appointment with her just mere days before she leaves.  She made a point of coming in to have her appointment with Mireya even after adjusting her schedule to see the remainder of her patients the week before.

Mireya had to have an EKG and a battery of tests/labs completed to monitor her progress and success.  We'll be seen every few months for the next year to ensure Mireya's progress is staying on task. Today we had an unspoken release. The release of emotion likened to when you had your first child and the Doctor handed you a healthy boy or girl and you were overcome with tears and emotion. Mireya is even more beautiful than the day they handed her to us AND (despite it all) her health has been restored.  Reya has been taken off all medications!  She will be able to start getting her immunizations and go to school with no restrictions.  There are several objectives and areas we have to be watchful over, especially given the medications and treatment she's received over the last few years, but we're believing even the slightest of instances will not be on our radar. We continue to stand, trust, believe, and confess  that her body will function as it was created and designed without incident.  

We have met some amazing families and people.  It takes one to know one (and to understand)......our circumstances and situations may be different, but we're all fighting for the same thing.  I'm looking forward to continuing to to serve, support and be an advocate for care and to those organizations/foundations/businesses doing amazing things to make a difference in the lives of others.

Thank you for your love, support, prayers and any/everything that was done to lighten our loads and minds during this process.  Life is good and our best and brightest days are ahead of us.

Miracles & Blizzards

We had an awesome time at Dairy Queen today helping raise money at their largest fundraising event of the year, Miracle Treat Day.  Dairy Queen donated $1 or more for every Blizzard sold at select locations today.  Thank you to all the friends and family that came by to support #TeamBolton and Children's Hospital of Richmond.  It's always amazing and touching to see the community come together to support an event that has made a difference in our lives personally and the lives of so many others. We appreciate you sharing this event with your co-workers and for spending time with us.  A special 'thank you' to Miss Chesterfield (and the Miss Chesterfield Organization), Kiara Williams & her Princesses for your community service and helping to make the event fun and glamorous!

Rest, Relaxation & Submersion

  We recently took our first vacation in almost three years and my oh my how I've missed the salt life.   One of the most treasured moments was watching Mireya swim for the first time.  Two and a half years of not being able to swim has been a challenge for all of us, because if one is not doing it, neither are the rest of us.  Mireya took to the water like a fish or as she says a 'Princess Mermaid', we could not keep her out of the pool.  We ate breakfast, she wanted to swim....we came in from dinner, she wanted to swim.  It was pure joy to oblige her.  Jumping back into our beach routine and groove was so much fun.  I miss digging my heels down in the sand and soaking up the sun.  Next on the agenda, time away for Mommy & Daddy...so thankful for life, love and togetherness.  God is good!

 

Summer Fun on a Mission

#TeamBolton has been having a great summer.  Days have been filled with friends, fun and enjoying things we've not had the chance to do for so long. Many priceless moments and times of reflection of just how far the Lord has carried and brought us.  One of the most touching parts is the 'thankfulness' Mireya has.  Many times she has grabbed my hand and said 'thank you' for taking me there, or 'thank you' for letting me do this (tear).

We were asked earlier this year to be a part of a feature story for the Children's Hospital of Richmond (CHOR). The  magazine is currently in circulation for the summer at a variety of places around town.  They did an excellent job outlining the journey with vantage points from both a personal and medical perspective. So thankful to have a Children's Hospital right here in town with Doctors, Nurses, medical staff and resources that we could count on to facilitate and oversee Mireya's care.

Magazine Cover

#TeamBolton Feature

Promo Flyer for Families with Heart Program

Our family also had the opportunity along with Miss Chesterfield to quench thirst and raise money for the Children's Miracle Network and Anthem's Annual LemonAid Fundraiser.  There were lemonade stands up all over town to help put the 'squeeze' on childhood cancer and benefit our local Children's Hospital.  Sometimes it's hard to envision the difference you make when donating a dollar or two, but its amazing what can be accomplished collectively.  Thank you to the many that were out and about that donated to this cause and those who stopped by to visit with us personally.

Our Hero Jalen

Local Firefighters Supporting the Cause

Miss Chesterfield Kiara her court & Miss Chesterfield Directors

Mireya will be having her one year checkup in about a week.  It's hard to imagine just a year ago we were gearing up for our second transplant and to see where we are today.  God is so faithful and we're so thankful! 

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)!!!