Thursday, February 6, 2014

Settling in Our Groove

These last few months have been a time to really getting back into our groove and enjoy the regular rotation of life.  It's very easy to want to jump right back into everything, but honestly just taking a step at a time, being present in the moment and living each day to the fullest without medical constraints or restrictions has felt like a true luxury.  I wish and want this for all our friends and family we know and love in the varying stages of caring for a child with illness and in treatment.

We continue to be so thankful for the restoration of Mireya's health.  Seeing her smile and knowing she is healthy brings us great joy.  The joy of the Lord continues to be our strength.

Psalm 19:8 The precepts of the Lord are right, giving joy to the heart. The commands of the Lord are radiant, giving light to the eyes.

Thursday, December 5, 2013

Students with Heart



I'm so proud of my daughter Paris who spent her birthday yesterday sharing and raising money for our dear little friend Emily's BandAid Drive.  We know this is a time that studying and making it through these last few weeks of the semester is the focus, so a special thank you to the students of LC that donated to help the children of Children's Hospital. Paris is her mother's child so she spent a lot of the day yesterday in tears because nothing is more moving than seeing the hearts of people come together to help and bless others.  That's what its all about creating awareness, paying it forward, being the blessing. Emily came in to our lives close to three years ago at the beginning of our medical journey with Severe Aplastic Anemia.  She and Mireya became very close friends and looked forward to seeing and spending time with one another in and out of clinic. This little girl is pure joy and a fighter. Keep Emily and her family in your prayers for complete victory over Neuroblastoma. Visit her site www.emilyhubbel.com to learn more about this special little girl and her journey. Last year Emily and her family raised over 3000 boxes of bandaids.  This is her 2nd Annual Band-Aid drive and we are so happy to be able to participate in this effort.  Band Aid donations are being collected through this week.

To my girl Paris and friends...you are awesome!


Wednesday, November 27, 2013

Thankful

 Gone are the days of being consumed with a life solely driven by treatment and all it entails.  Today we are enjoying living life in a new way (the difference a year makes).  Everyone is healthy and happy and there is so much we are grateful and thankful for!  My prayer is that everyone take a moment to truly understand how fortunate and blessed we are despite it all.  There are many things that have the ability to steal our joy if we allow it. 'Choose' to maintain a positive disposition regardless of the circumstance or situation. Make someones day and change how you feel about yours!  Look for ways you could bless others today...a smile, a phone call, a hug, a encouraging word, a meal, a dollar, your time...the list goes on and on.


Take time to reflect on the positive and move past the negative to reposition yourself and help others. Wishing everyone a Happy Thanksgiving!  Love and blessings to you all!

Tuesday, September 17, 2013

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.


Wednesday, September 4, 2013

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.

Thursday, August 15, 2013

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.

Thursday, August 8, 2013

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!