Champions

We spent the first part of today at the Children's Hospital in Child Neurology trying to get closer to figuring out how to address and work through some of the issues Mireya has been having over the last several months.  I feel confident that we were able to put a plan in place that will be helpful.

We spent the early evening celebrating an amazing honor granted to us by the Children's Hospital of Richmond at VCU.  Many of you may remember, in October of last year Quentin and I were at the Q94 studios to share the #TeamBolton story for the Radiothon.  At the conclusion of the taping, we were asked for a few minutes of our time by our friends at CHOR to tell us about an Ambassador program for Children's Hospital they wanted to nominate both Jalen and Mireya for.  The program brings awareness to healthcare, Children's Miracle Network (CMN) and the importance of supporting Children's Hospitals and programs across the United States. 

Every year after a series of nominations 'one' family or 'one' Champion is chosen as an Ambassador to represent his/her state.  Jalen and Mireya were submitted in recognition of their ability to brave their respective battles with grace, strength, courage and determination despite and through it all.  We continue to be in awe of all they endured over the course of two and a half years to bring us where we are today.  

When we received the phone call about a week ago, I pulled over on the side of the road, speechless and in tears....I am so proud to share the 2015 Champions for the state of Virginia are Jalen AND Mireya.  Our friends at CHOR planned a super special family celebration for us at The Desserterie to announce and share with the children that they were chosen to represent Virginia this year in this role and capacity.  What does this mean???  It means we continue to do what we've done all along...participate in events to support the Children's Hospital and CMN, share our experience and our story. But wait there's more....an Ambassador's Tour.  Two trips, one to the White House (the 2014 Champions met and spent time with the President) and a second week long trip to Walt Disney World with approximately 52 other families (one family from each U.S. State and Canada) all together for a common goal.  What an amazing opportunity.  Here's a little clip of the 2014 Champions and their time together on the tour.  Thank you BIG sister Paris (unable to be with us) for dialing in from school for this special occasion.
http://childrensmiraclenetworkhospitals.org/About/Champions  

News traveled fast via FaceTime to Big Sister 

Thank you to so many that have loved, supported and kept us covered in prayer. We are so honored to be thought of in such a way to be nominated, but even more humbled to be chosen.  To God be the Glory! 

1 Peter 2:9 But ye are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that ye should shew forth the praises of him who hath called you out of darkness into his marvelous light

Ready, Set, Go!

It's been a long and eventful few weeks.  36 hours prior to our trip we were told we would not be able to go (sigh), but received a call later that day that we could (hooray).  So less than 30 hours before our scheduled flight we were coordinating, strategizing and preparing to go to the magical place where dreams and wishes come true.   God will work it out and make a way!

Mireya's counts continued to decline following her first IVIG, so a second transfusion was scheduled the day before we left.  Nothing like sitting for several hours in clinic when there was so much to do at home, but we need to cross all the t's and dot all the i's to see if we can get these counts to turn around.  In order to test the effectiveness of the IVIG, labs needed to be drawn within 24-72 hours after the infusion.  We made our way to Phillips Hospital in Florida to have Reya's counts checked.  Her white and red cell counts increased but the platelets continue to tank and as a result she continues to have some bruising and petechaie. We had an AMAZING time away!  It was so wonderful to not be consumed by procedures, clinic visits or illness for several days...just fun, smiles and incredible memories.

We arrived home very late last night and were in the clinic very early this morning for Mireya's second bone marrow biopsy.  I was in the room, but choose not to watch the procedural portion of the biopsy.  One time is definitely enough.  We expect to have some preliminary results by Friday and hopefully some plans on our next steps. 

Continue to keep us in your prayers and check back for the full monty on our trip to Disney.  Love and blessings to you all.

The Wait Isn't Over

Our follow-up appointment this week was not as favorable as we would have liked.  The biopsy last week was a 'fail' and as a result will have to be repeated.  My heart sank after hearing this news.  They were able to remove a good bone chip sample, but apparently there was not enough of the marrow substance available to do the in-depth testing needed.  From what they could see, it was determined there were no 'blasts' present on the slides from the aspiration of her bone marow.  When a higher than normal ratio of blast cells are found it is usually indicative of the common blood-related cancers.  This is a discussion 'first' for us as it pertains to blasts, but we know certain medications taken during our treatment plan can increase the probability of certain blood-related cancers, so it was good to speak and rid ourselves of any additional madness.

It is disturbing to imagine having to go through another bone marrow biopsy.  It took a lot to sit in the room while they performed the biopsy. Thank goodness Mireya is anestisized.  Sitting through it again is not high on my list of things to do, so perhaps I'll 'sit out' of that particular portion of the procedure when/if it is necessary to repeat. Mireya's counts have also decreased this week.  We were hoping to see some sort of rebound and that her cell lines would increase if only in small increments. Without the sufficient test results, the medical team is at a loss of what is causing these problems. We were pretty much off the Aplastic radar and placed in a rotation to ride this out for another few months, remove the Hickman and then come in for routine follow-up to track our success. The fact that her counts have decreased and there is no evidence of a virus or infection is puzzling.

Upon further review of Mireya's labs over the last several weeks, and the downward trend of certain counts, the Head of Pediatric Hematology & Oncology, decided she would like to first give Mireya a IVIG infusion to see if possibly that will jump start her counts to increase.  We did two rounds of the IVIG close to a year ago with no success, but at that time Mireya's body was not producing or holding any counts consistently without continual transfusions.  Dr. Godder believes it could be ITP.  ITP was the initial thought when all this started until about two weeks later when we saw significant drops in her white and red cell counts. It wasn't until after those results that she was diagnosed with Aplastic Anemia. We're not 100% convinced it's ITP as ITP only affects platelets, especially with the dip this week in her hemoglobin count.  We are open to trying the IVIG and see if it makes a difference before repeating the Bone Marrow Biopsy.

Many of you know Mireya's Medical team submitted her to the Make A Wish Foundation.  The Make A Wish Foundation is an incredible organization that grants wishes to children battling life-threatening illness.  Mireya was approved for a wish and would like to go to Disney World to meet Princess Aurora (a.k.a Briar Rose and ultimately Sleeping Beauty).  This trip is scheduled within the next several days.  It has not been determined if we can still go.  Based on this new turn of events, the ability to travel for now is up in the air literally a day or two before we're to board the plane.  Mireya's health is the of the uttmost importance.  We consciously decided not to tell the children about the trip when we found out several months ago. One, anything could happen (tada) and two I really didn't want to be asked daily 'is it time yet'.  However,  Make A Wish and a awesome company in Chester, Cellular Sales  threw Mireya a 'Send Off Celebration' a few weeks ago. Mireya, is now fully aware she's scheduled to go to Disney World shortly after her birthday and is really looking forward to it.  I definitely have a lot to share about the Send Off and how amazing Celluar Sales in Chester is.  Ironically, this entire downward sprial began the morning after that celebration and I've not had the chance to share how incredible of a night that was for us (more to come, so look out for that post soon).

The IVIG is scheduled for tomorrow on Mireya's birthday.  Not the way you want to spend your birthday, but trust me we will celebrate BIG when she gets home.  Reya will have to be retested with 72 hours following the test and we will go from there.  If there is no significant increase in the counts, the team plans to repeat it a second time. It is not uncommon for a patient not to respond after just one treatment. This is where it may get tricky as far as travel timing.  We do not want to have issues that require medical attention or transfusions while we're out of town, nor do we want fatigue to be an issue for her with a hemoglobin level that is dropping.  It is possible to give Mireya a blood and platelet transfusion prior to going to Disney to tide her over through the trip. We're believing we'll have positive results next week.

If there is not a favorable response, then we repeat the bone marrow biopsy to determine the cellular makeup of her body. Specifically her cells vs those given to her by Jalen.  If all else fails, she will have to receive a 'boost' of cells from Jalen.  This procedure would not require her to go through a full transplant with chemotherpy and the full scope of meds again  It most cases, the 'boost' has proven successful when a bone marrow recipient has exhibited these issues and other treatment options have not worked.  Jalen on the other hand, would have to endure the same process to harvest his bone marrow.  I'm hoping we don't have to go this route because I really don't want Jalen to have to go through this again. However, I realize God gave us Jalen as a way out and we are thankful we still have her brother to draw life from for his sister.   Continue to lift us up as a family.  This has been an emotional pill to swallow, but we know nothing is to hard for God.  Even as our emotions fluctuate and we struggle with finding ourselves in this place right now, we know where our trust lies and our faith has not wavered from that truth.

Be strong, all who wait with hope for the Lord, and let your heart be courageous.  Psalms 31:24

When you Wish Upon a Star

The Make A Wish team came by to meet Princess Reya and begin the process of designing a wish consisting of who? what? where? and when!  That line of questioning took us straight down a path to Disney World to meet none other than Princess Aurora, Mireya's favorite princess.  The volunteer team arrived with a special 'Make A Wish' Barbie doll for Mireya.  She was so excited about this beautiful new barbie to add to her collection.  The kids were on 'all energy' for the entire interview.  You'd think we'd not been out the house much or had very minimal interaction with people. Hmm...sounds familiar?  There were tons of questions to answer.  Mireya's second wish choice was a family beach trip.  We weren't able to take our planned beach vacation this year and Mireya told me repeatedly in the hospital how she wanted to go to the beach.  Can I interject and make that a international beach trip to Turks and Caicos?  I know I continue to digress, so back to making a dream come true for Mireya.

Disney is apparently one of the most popular wishes amongst the little ones.  I've never been but have several friends that have done Disney many times and love it. We had plans to do Disney this past Spring Break, the week of Mireya's birthday, but ended up changing those plans because of a conflict.  We thought about when we could possibly do it again, but hadn't revisited it.  We were in Orlando back when Paris was about eight years old and decided to do Universal Studios and Adventure Island instead of Disney.  Nickelodeon was really big then.  Somehow we were selected for one of those Nickelodeon game show segments and I also got picked out of the audience for an Animal Planet piece that concluded with me and another woman holding an albino burmese python.  I wanted to pass out, but we had a lot of fun at both parks.

Disney would be a first for all of us. Mireya's loves the Disney Princesses, but it wasn't until after she had her transplant that she realized there was actually a place call Disney World.  We'd never mentioned the impending trip to the kids, in the event we didn't go, but if you recall, I used going out of the room to look up all things Aurora as a privilege for getting out of the bed and walking around.  In the beginning we found a lot of animated videos and songs, but one day Mireya saw a little girl meeting Princess Aurora while at Disney World and she was hooked on the notion you could actually go somewhere and meet Princess Aurora.  It will be a treat when she realizes Princess A hangs with a crew of girls namely, Cinderella, Snow While, Tiana, Belle, Ariel and Jasmine.

We're not sure when her medical team will allow for such a journey, but it will be something really awesome to look forward to.  The volunteers left, but the smile on Mireya's face remained well into the next morning when she told me how happy she was to meet Ms. Tammy and Ms. Kim and receive her special wish Barbie.  She continued to tell me all throughout the day how happy she was to receive her wish.  She believes the 'Make A Wish' barbie doll was her wish.  She will be so surprised when the time comes to actually go to Disney and meet the princesses.  I'm super happy for Mireya. What an amazing blessing it is to have something so special planned just for her.

Over the years I've made pledges and donations to the 'Make A Wish Foundation'.  To date over 212,000 wishes have been granted and every 40 minutes a new wish is granted. That is truly amazing!!  I never imagined I would be on the receiving end of a wish come true, but I'm thankful for an organization whose mission is to give hope, strength and joy to a child suffering through or recovering from a life threatening illness.  Thank you Make A Wish Foundation!