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.

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.

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!

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.

Fun Times with Connor's Heroes

 We had a great time with Connor's Heroes at the Winter Wonderland and Holiday Ball event.  Connor's Heroes is one of our favorite organizations that is doing fabulous things in the community and for families of children with cancer and other life threatening illnesses.  Lisa Spickler-Goodwin's family has walked in the shoes of diagnosis, treatment and (thank God) victory over illness.

#TeamBolton has personally benefited from many of their programs.  From decorating Mireya's room on the transplant unit both times (so beautifully) and supplying it with lots of games, activities and princess garb to keep her mind busy throughout her stay there. Their backpack and tote bag program provides families with meals, gas cards, grocery cards, and the backpacks for the kids is filled with an assortment of goodies to help get them through their clinic visits and hospitalizations.  They were thoughtful enough to include a Mommy/Daddy pack for our stay with Mireya.  They visited with us at the hospital and also loved and supported Jalen, our Super Hero Donor Big brother through both of his hospitalizations.

We've enjoyed several family activities sponsored by Connor's Heroes.  We love their SuperHeroes and Sidekicks program.  Each of the children has their own personal Sidekick they are able to spend time with doing a variety of activities.  They all LOVE their sidekicks and spending time with them individually and collectively.  It's such a blessing to have these types of activities we can do together as a family.

In a few months, #TeamBolton will be organizing a drive for Connor's Heroes that I hope you will consider being a part of.  We want to be a blessing to them as they continue to be the blessing to others.  It's the hearts of people coming together to share and show love to others.  Stay tuned for details. 

Fun Filled Days

Mireya's had a full day of activities and fun. The Art Teacher, Ms. Gretchen came by, she and Reya painted several pictures and made all sorts of things with playdough.  Ms. Fran, from Connors Heroes stopped by to check on Jalen's status and visit with Reya.  She also bought Mireya the movie Enchanted, which we really enjoyed watching.  The Music Teacher stopped by earlier this week to see if she could visit with Mireya today and sing Princess songs.  Mireya had so much fun playing the guitar and the Q Chord.  She learned to play Mary Had A Little Lamb and Twinkle, Twinkle Little Star all by herself.  Friends are in town and stopped by for a quick visit.  Mireya is seeing a lot of new faces, but it's always great to see old, familiar faces you know and love.  Ms. Nadra, the Hospital Teacher also visited with us today. She and Mireya had fun playing a host of engaging educational games on the Ipad. We had a quick call from Jalen and Makinley on Facetime, and now Mireya is back to playing her new games. We LOVE and are so grateful for our I-gadgets.  They've really been helpful in keeping us connected and Reya occupied.

Medically speaking, Mireya's throat continues to be an issue.  An analgesic mouth rinse has been added to her medications to help with the discomfort.  Mucositis is a common culprit associated with chemotherapy that affects the mouth, mucous membranes and the digestive tract. Mireya's stomach has also been bothering her.  We're praying over Mireya's desire and ability to eat because we had issues with Mucositis last year and it resulted in her being put on TPN for nourishment purposes and because of concerns with her weight.  Reya's magnesium level continues to linger.  They've added oral magnesium, in addition to the IV Mag, to see if we can boost her magnesium level.  It has been a super busy day, but Mireya enjoyed every minute of it. We're so appreciative of the organizations, programs, and the resources extended and made available to us.  Seeing her in good spirits with a smile on her face, brings me tremendous joy.

Let's Get It Started

Jalen started his conditioning regimen to increase his cell counts in preparation for their debut later this week.  He's scheduled to received these injections daily until Thursday.  The Medical Team believes Jalen has Gilbert Syndrome (prounounced jeelbear).  Gilbert is a mild liver disorder that affects the break down of red cells in the body.  As a precaution, he will need to be monitored very closely during this transplant process.  Stress and anxiety are common factors in elevated bilirubin levels with Gilbert.  We fully understood the extent of Jalen's alarm and worry over having to be his sister's donor again.  We expressed our concerns and loosely suggested Jalen have some sort of contraption available that would allow him to inhale nitrous oxide or some sort of relaxing solution as needed.  It probably sounded crazy and over the top to them at the time, but after having Jalen retested and the level still being double where it was a year ago, we're having discussions about putting things in place to help eliminate his level of stress and worry.  Included in our arsenal of relaxing medicine, breathing exercises and numbing cream, we have now added freezing spray (basically the artic freeze for shot locations), an i-port (subcutaneous to eliminate multiple sticks) and the Anesthesia Team is on tap as needed.  The insuflon catheter (i-port) is awesome.  Having it placed, was not without opposition or tears (mine and his), but it made administering his injections today a breeze.  From zero to done in twenty seconds.  Go Jalen!  I love my boy and I'm so proud of him.

Today marks the beginning of the process.  Mireya's chemotherapy has started.  My heart is heavy.  It's difficult to leave the hospital and live your family life in this mode of separation.  It's already been a pretty long day and we're back at it tomorrow.  Continue to keep us lifted.  Special thanks to Lisa, Fran and the volunteers of Connors Heroes for pulling off the unimaginable....another amazing room for my Princess. Simply beautiful! Mireya LOVED it.  Makinley and Jalen also appreciate how you (as always) included them. Quentin and I also love the 'Parent Pack'. Thank you for making our space on the Unit feel like a lovely place to be, despite our days ahead.  You are a blessing to us and in the lives of so many children and families. 

Back on the Block

We're back on the Hemoc Block and man it didn't take long to be right back in the flow of things. Reya was in a very upbeat and super jovial mood. Getting through vitals and the draws was a breeze today. We got to see Allison and her Mom. They were in clinic but had plans to come up to Bone Marrow Unit to visit with us and Emily. They were excited to see Mireya discharged from the floor. Allison is doing really well. She just returned from a week long camp sponsored by Special Love and it sounded like a totally awesome time. They gave Mireya the most adorable and fluffly stuffed puppy. It's so soft. We'll have to figure out a name for him. We had a chance to catch up with one another. Mireya enjoyed time 'playing' with Allison. It was so sweet of her to hang out with Reya for a little while. 'Fast Hands' are good for basketball, but not when your rotating through pictures on your camera. I had taken a great picture of Mireya and Allison together and 'accidentally' deleted it. Will have to try again another time.

It was a long day. We were in the clinic for over eight hours. Reya needed a blood transfusion. She has built up some antibodies so the search was on for a comparable blood product. Once they located what was needed, took a little over three hours for the transfusion to complete. Always arrive at the clinic with your bag of tricks full of snacks, a blanket, activities, and anything else to pass the time away. I learned that after our very first appointment. Reya's counts are a little lower than they were upon our release and she will require a new med to be administer via her line at home. There are a few other things to look out for with this infection to ensure it's not GVHD (Graft vs Host Disease). Everything we are seeing is within the scope of expectation, rather things that 'could' occur throughout recovery.

Connor's Heroes was here today and you all know how much I LOVE, LOVE, LOVE them. They are celebrating 'Christmas in July' and are handing out bags of really cool stuff for every child (patient, sibling(s) and friends) in the clinic today. I had a chance to talk with Lisa Spickler Goodwin (the Founder and Managing Director) about the positive impact and how much of a blessing Connor's Heroes is to so many. It really does help to have someone or a group of someone's that know and understand what it is like to endure the reality of 'the diagnosis' and all it takes to rally through treatment and recovery.

We're back in rotation and will be in clinic every other day for check and balances, counts and whatever else is needed. We're praying and thanking the Lord for increase in Mireya's counts and continued increase in her health. Being at home has been a huge lift for her spirits. She is happy and even more vibrant. God is good and continues to show himself through the love and kindness of so many. We love and appreciate it all. Thank you!!!