Saturday, December 24, 2011

Merry Christmas



It's Christmastime and we are about to move into a new year.  2011 has been quite a year for the Bolton family.  One that overwhelmed us with uncertainty and sadness but was overturned with hope, goodness and an expected end.   This is a year we will never forget.  Our lives were turned upside down, but each day we did our best to enjoy being right side up.  We have a renewed outlook on everything in life, a greater appreciation for each other, and an increased level of faith, because God has been so incredible in our lives.

We pray for the many families that have walked in these shoes and those just suiting up for the fight.  Our journey is not over, but the worse days are behind us.  Our children have shown admirable strength and resilience through it all.  Mireya is our (s)hero and our warrior.  Words cannot express how grateful we are for her life.  Give thanks, smile more, pray often, do your best to serve others and don't take your life or the life of those around you for granted.

Merry Christmas and Happy New Year....2012 is going to be one of the BEST years of our lives!

Wednesday, December 21, 2011

Mireya's Progress

Mireya has been doing fabulously.  Counts continue to improve and her overall health is increasing.  Post 100 days we have been able to eliminate wearing the mask unless in a very heavily populated space.  Reya  was so delighted by this.  She just giggled with excitement at the prospect that she could go outside and play without a mask on.  We were walking to the bus stop to pick up Jalen and she said 'Wow' I can 'feel' the air on my nose and mouth.  My heart wept in that moment.  The simple pleasures of life that we take for granted.  Reya's hair is growing back and it is beautiful.  We are in clinic every two weeks which is a blessing and she still receives her monthly treatment to help prevent pneumonia, which she has had about once each month, so I'm not sure how well that is working, but I'm happy we've been able to identify and treat each case of pneumonia without further issue or concern.

We still have the Hickman Catheter in for blood work and to administer one of her meds via the line.  It will be so awesome when we can get that out.  She'll be super excited to do two things she misses very much...take a bath and go swimming and best of all not have to deal with weekly dressing changes.  We still have several months of treatment to go through, but overall we are tracking beautifully.  Thank you for continuing to keep us in your thoughts, prayers and for checking on Mireya's progress.







Saturday, December 10, 2011

Polar Express



Do your kids have a bucket list? I know a 'bucket' full of sand in the summer time is probably as much a thrill for your kids as mine.  Jalen and Mireya have both wanted to ride a train for quite some time.  Timing and life as we know it for the past year have sidelined attempts to plan something, but we had the awesome opportunity this weekend to ride the Polar Express.  

I held off telling the children about our plans until the day before which was Jalen's birthday.  Jalen was so excited and was also of the impression we planned this especially for his birthday.  It was sort of a trade off in his mind for the 'Swagger Party' he really wanted to have (that is entirely another blog post).  Mireya just giggled with excitement and Makinley heard train and knew it had to be something good.  Choo Choo!

We arrived at the Train Station and the kids were greeted by a cheery group of elves.  Each child received jingle bells and a conductor hat in preparation for their journey.  The level of excitement and anticipation increased as the children waited for the train to pull into the station. There were smiles from ear to ear as we boarded the train.  Just as quickly as we stepped on the train, we were off to our destination.  All the children's little faces were pressed against the window as the train raced down the track.  A car ride to Ashland would take about 30 minutes from the station, but we got there in a record twelve minutes.  If you took the kids to the bathroom, you missed it, fortunately I 'made' everyone go just before we left.

When we arrived we were greeted by more elves and Mr. and Mrs. Bear.  Jalen has always been a bit leery of large over-sized characters, however, Mireya and Makinley immediately ran to them for a hug.  As we walked across to the lovely Henry Clay Inn, Santa and Mrs. Claus awaited us.  The kids went wild, that is, except for Makinley who wanted no parts of Jolly St. Nick.  Inside there were crafts, games, food, and lots of fun.  Mrs. Claus read the children a story which the really enjoyed and by the end of our Polar Express experience Makinley and Santa got friendly.  Each child was presented a handmade Polar Express Christmas Ornament with their names inscribed.

We extended hugs and waved goodbye to everyone as we boarded a chartered bus to return to the train station. Thank you so much to our coordinator Kaila and the Leadership Team at James River High School for planning and hosting such a wonderful event.  It was truly a special time for us as a family.

Friday, December 9, 2011

First Step Preschool


The girls are super excited about attending the First Step Preschool Program.  We had the chance to go to the First Step Preschool party to see everyone and it was awesome.  When we arrived the girls did some fun crafts and 'hand'y artwork.  Mireya and Makinley loved shaking the bells and banging the sticks during circle song time....twas a lovely noise fest.

Lunch was served and games were played. Anytime you have a blindfolded kid that spins around several times, then tries to make his/her mark, expect laughter and there was plenty of that.  Pin the tail on Rudolph was definitely a crowd pleaser.  The children had so much fun and were full of surprise and expectation as the elves led each one to the 'present room' where they received a gift selected just for them.  Most of the boxes were as big as the children and they loved ripping into their packages to see what special gift Santa left for them this early.  There were smiles shining all across the room.



The best part for me was seeing the joy in their eyes.  This was an opportunity to be out, with other kids (outside of the clinic), having a good time.  A very special 'thank you' to the Middlesex FBLA and all the cheery volunteers that made this such a special occasion for every child there.  I loved reconnecting with several Moms I've not seen in a few months and also meeting some new ones.  We are all in this boat together and it is such a awesome blessing to be able to talk to and share with other Moms that can relate specifically to where you are.  I also learned that one of the families will be taking their 'Make A Wish' trip to Disney in a few weeks. We we're recently notified that Mireya's wish has been granted and signed off on by her medical team, so it will be great to hear all about their trip before we go. 

We are so thankful to ASK for the First Step program.  First STEP (Socialization Through Enriched Play) is offered through ASK to provide supportive services for young children whose preschool or kindergarten experience has been postponed or interrupted during medical treatment.  First STEP offers an individualized early childhood educational program for ASK Pediatric Hematology/Oncology Clinic patients and families and is designed to meet the unique educational, social and emotional needs of young children with chronic illnesses as they go through the process of healing. The program consists of several kids currently in treatment and several in the maintenance phase of treatment.  The girls had an awesome first day and it is something we will all be looking forward to each week.


Wednesday, October 19, 2011

Celebrating Good Times

Celebrate good times c'mon....let's celebrate (a little Kool & the Gang).  The hubs got a new job and a celebration is in order. I'm extremely proud and super excited about this next level for him professionally. We're celebrating purposeful changes I'm making with success.  You can do anything you believe in and set your mind to.  We're also celebrating because Mireya's hair is really starting to grow.  Her little head is 'almost' fully covered with a thin layer of fine hair and every time she reaches up there and 'feels' it, it makes her smile.  Most importantly this past week we celebrated reaching the 100 Day Mark post transplant.

Mireya continues to do well.  We found out at our appointment this week following a chest x-ray that she has pneumonia, so she has been given antibiotics to address that.  A few counts continue to fluctuate for no good reason, but the overall picture is good.  Day 100 is considered a major milestone.  By this time period, you are considered past the worst of the procedure and on the path to recovery. There is some significant testing she will have done next week that will give us an in depth look at her cell makeup and progress since the transplant.  The full recovery process is slow and in some instances could take two years for the immune system to be reconstituted.  We we are believing Reya's health will be 100% by her new birth/life day July 6th. Day 100 has allowed us to eliminate several of the medications Mireya takes daily, which is awesome!!!  We don't fully know what Day 100 buys us in our day to day life??  I was hoping for a little more freedom, but it seems like everything I've asked about being able to do has been sidelined until further notice, BUT we know and celebrate that it is a major medical milestone and that is what counts the most.

So many things to celebrate and be thankful for.  God moves even in the midst of our darkest days and times.  He allows us to see and be reminded that he is with us in and through it all.  Thank you for your continued love, support, thoughts and prayers!!!

Friday, October 7, 2011

Be the Match





  

Extreme Makeover Home Edition is ALWAYS a tear jerker.  This week's episode hit so close to home.  It featured a family where the sweet 7-year old boy Jonah has two life threatening and debilitating blood disorders.   http://abc.go.com/shows/extreme-makeover-home-edition/episode-detail/gomez-family/857223

I sat in awe of what this family endures and goes through and thanked God for the miraculous works in our journey. This little boy and his family are amazing and continue to hold out hope that a donor match will be found for him in order to save his life.  Thank you Lord for Jalen.  Thank you for our son whose own journey into this world was preceded by a number of miscarriages, but 'his' life was preserved so he could give life to his sister.  During the segment they were able to find family members his mother did not know about and those she had lost contact with to also test, but he has no immediate family member match.

Jonah is a handsome, vibrant little boy that LOVES soccer.  Take Mireya's love for princesses to the 10th power and that is his love and obsession with soccer.  Because of his condition he is required to be on oxygen pretty much 24/7 and that prohibits him to live and breath soccer in the outside world.  You know Ty hooked him up with his very own indoor basement soccer field that came equipped with a full on and fun oxygen bar.  Just too cool for words, but the reality is that without a donor match for him, his life remains in jeopardy.  One of the most beautiful things I witnessed on this show outside of the house, because we know Ty and his team are great at what they do, was the coming together of community and organization.

Jonah's is wild about his hometown soccer team.  The team started an initiative that went to soccer stadiums across the world to find a match for him.  I cried at the sheer number of people that completed the testing to see if they are the match.  Unfortunately, they did not find a match for him, but they were able to find matches for five other people waiting for bone marrow transplants.  Amazing!

I'm so proud of Paris who has been volunteering at 'Be the Match' events on her campus spreading the word, sharing her sisters story and encouraging fellow students to get tested.  When I was about 15 years old there was a little boy at my church suffering from a life threatening illness that needed a bone marrow transplant.  Our church coordinated a drive to find a donor for Little Ron.  There were people lined up all around the building for testing.  It was incredible.  I remember thinking oh my goodness I can't do that.  I hated needles and all I could see was them injecting a huge needle into my body to test my bone marrow.  It was truly a scary prospect, but to find out that a simple swab of your cheek could position you to save someone's life is truly something we all can do.  It is my hope and desire to coordinate a drive with or through 'Be the Match' in the future.  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.  In the meantime, I encourage you to visit http://marrow.org/Home.aspx and join the registry or see how you can become involved with this organization and potentially save Jonah's life or the life of someone else in need of a bone marrow transplant.

Sunday, October 2, 2011

Resting in My Funk

Where have you been?  That is a great question...I've been thinking about writing but no real motivation to do so.  Things to do, places to go, but no desire to get any of it done and you know what? That is ok.  Isolation has been challenging, but all is well.  For now I'm resting in my funk.  I know 'funk' isn't a good word, it implies doldrums and unhappiness, but over these last several months we've expended so much mental and physical energy that sitting still and doing absolutely nothing is ok. It would be nice if it were on a beach somewhere (I know thoughts of the beach always make me digress), but trust me that day will be here before we know it.

Mireya is doing great as are the rest of the crew.  I have no plans to dwell in this space long, but for now I'm decompressing and resting in my funk.  We'll reconnect soon.



Saturday, October 1, 2011

Caregiving

I had the best model of selfless love as I watched my Mother care for my Dad for many years.  Never did she complain or say 'why me' Lord, but she diligently did everything in her power and might to ensure my Father was cared for.  I understand even more now the sacrifice, the love and the work it takes to hold all of that together. She walked out a true example of bearing your cross and gracefully handling that which the Lord has trusted in your care.  I love and appreciate her for that beyond words. Her true reward(s) await her.

I don't consider myself a caregiver, but dealing with illness when a child cannot care for themselves is not a light task.  Some people are made for this because it is their hearts desire to serve and care for others in this capacity.  Others suddenly find themselves in this place and then it becomes your hearts desire to do all you must to ensure your loved one is taken care of.  This can be a very overwhelming space.  Medication schedules, temperature checks, flushing lines, breathing treatments, dressing changes and so much more.  You don't want to miss anything or do anything wrong. You feel like the RN without the 'R'.  One 'R' in this case is Responsibility.  Responsible for administering and managing Reya's care while she is with us. The greatest setback for Mireya would be to get sick and have any sort of infection that would cause her body to reject the progress of her bone marrow transplant.   Isolation, hand washing, sanitizing, and doing any and everything to minimize exposure to bacteria.  That in itself could take you to the land of OCD (Obsessive-Compulsive Disorder).  Imagine layering that on top of what is already going on. Yes the Twilight Zone could seem very near.  

The other side of all of this is the emotional side.  It is a very draining process.  I had a time recently where I just wanted to sift through all that has occurred and allow myself to just feel and express whatever I wanted.  Suddenly your life is turned upside down and you now have a new set of priorities to adhere to.  Life doesn't stop, nor does the demands of the other five people that need your love and attention.  Yes I include myself in that number, because it's so easy to forget yourself in this process.  The greater of our emotions over time has been thankfulness.  Thankfulness for medical resources, miracles and a community of people, organizations and friends that have surrounded us with love and support beyond words.  All these things have made our journey lighter.  Love conquers all, and being immersed in the love God has for us through the actions and blessing from others makes it easy to keep pushing.

This has been a time of many emotions.  When you are faced with caring for a loved one that is unable to care for themselves, especially one that is only four years old, it can be difficult. Isolation has been hard, but ensuring that Mireya's immune system is not further compromised, so in several months we can live, move and have our being freely is a small sacrifice in the grand scheme. We are working to protect one of our greatest gifts and it is absolutely worth it.  It has been key for us to try to maintain a quality in life for Mireya that allows her a measure of control through something that is totally dictating how we live right now.  Also allowing her sense of self to remain intact.  Reminding her of just how special and beautiful she is.  Placing little to no significance on hair.  Hair is something you can 'choose' to cut when you want and guess what it grows back, and also reinforcing the fact that all the things she cannot do right now she will be able to enjoy again soon. 

The 'R' for us has also been Revelation.  I am amazed that something so rare could find its way to us, but God knew he had a 'ram in the bush' in Jalen and that as we submitted ourselves to him as our source for everything we needed, along with a world of people praying for us...that in the end it would be 'better' than alright.  We know this is not the story for everyone, so we continue to pray for those in this same place or those living and existing in their own  "Lord I'm depending on you" space.  Remain hopeful and keep the faith, only God knows the end, so keep trusting him to see you through.

I'm so fortunate to have my husband and best friend beside me. The Lord has shown us that together we are a force to reckon with. You never imagine yourself here, dealing with a life threatening illness and all it entails, but in the midst of this we've learned how strong we are, how strong our faith in God is and how much he loves us.  Marvin Sapp's "Never Would Have Made It" is like an anthem because it's only by the grace of God that we're at this place.  You hate to say 'why me', but the even stronger expression of 'why not me' hasn't been my mantra either.  I've simply talked to the Lord and told him that for whatever reason it is us and please just help us through this because we believe on the other side of this is a miracle and a blessing. In the Old Testament, they didn't just give their child a name because it was popular or sounded cute. Names had such significance back then. Never did we imagine when we gave our daughter her name Mireya (admired/miracle in Spanish) that she would be our 'living' Miracle. The simple fact that you wake up every day is a blessing.  Life is too precious and it is not promised. We continue to speak life and thank God for her life. 

John 10:10  The thief's purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

“Words can never adequately convey the incredible impact of our attitudes toward life. The longer I live the more convinced I become that life is 10 percent what happens to us and 90 percent how we respond to it.” ~ Chuck Swindoll


Wednesday, September 28, 2011

BMF

Friendship is a beautiful treasure...best friends, life long friends, girlfriends, sister friends, mommy friends and the list goes on and on, but does anyone have a BFF with a Y Chromosome?

Growing up I was a 'bit' on the boys team.  You could typically find me riding bikes, playing 500 or football with a group of boys.  I always rolled with girls, but felt comfortable in either crowd.  When I lived in Panama, I had a really good friend named Johnny.  We were cut buddies.  We'd spend days playing video games at the arcade, climbing trees, playing football, exploring the jungle and just having fun.  Remember the days of good ole' platonic boy/girl fun?  When I moved back to the states I hung out with a group of guys as a member of a breakdancing crew (don't ask, but we were serious and traveled around performing).  My first trip to Canada was with those guys.  Shout out to Ronnie and Marc!!

When my family settled here in Virginia, my BMF (my best male friend) was Tony. Young bloods having fun back in the day.  Family gatherings, card games, rollerskating, dancing, club hopping, and playing tennis almost every day.  Tony is one of the funniest people you will ever meet.  Our friendship changed somewhat when he got married and I was not a big fan of the shift in dynamics.  I was really selfish about what I felt was an intrusion on our friendship.  I'm happy to admit I got a dose of reality once I was married.  Several years went by where we'd lost contact, but once we reconnected I had the opportunity to apologize for being so selfish and not understanding my place once those vows took place.  I love Tony and his wife.  They are the same awesome and fun couple they were back then.  Life just doesn't allow us the time to get together as much as we'd like to.

When I moved to New York I had an ace boon coon named Sam.  Everyone needs a Sam in their life.  Sam is a friend that will always have your back, always tell you the truth whether you like it or not and always be there to help you along the way.  We've had some major life moments together and even though he now lives on the opposite coast, we are still close and can go right back to the good times in the NYC.

When I returned to Virgina and jumped back in the corporate scene, I had two very close male friends.  There were very few woman that worked in the IT arena at that time.  On our project out of 100+ males, there were less than 10 of us.  Ed and I were like yin and yang at work.  Breakfast, breaks, lunch, breaks, hitting the gym after work and then start all over the next day.  This friendship was one that if Facebook were in the mix and either of us said 'in a relationship' people would have instinctively thought 'those two', but we were just really cool like that.  Thomas and I were super close too, weekly lunches, deep conversations, work trips, tennis matches, softball games, etc,  Over time I lost touch with both of these guys, but I have since located them both (thank you Facebook) and they are doing all sort of fabulous things.

Has anyone ever had that male friend where you crossed that line romantically and you should have just left it alone? Most times it's not worth the curiousity and other times you realize wow this was a mistake let's just go back to being friends and it might be salvageable?!  Running out of that phase, along came the new guy on the project who became my ultimate most favorite person in the world, my husband.

Many know the story, I tried to marry him off to his college girlfriend and hook him up with my sister.  I'm so glad none of that worked. I thought Quentin was a great person from the first day I met him.  He is screamingly hilarious.  Don't let the initial quiet factor throw you.  There was so much I admired about him as a person that after I'd tried all my shinnigans to set him up I realized once he moved to another team internally, how much I missed having him around and in my life on a daily basis.  I told my best female friend I was going to marry him or someone like him. Two years later our paths came together and we never looked back.

Quentin is definitely by super best friend with a Y chromosome.  I look foward to seeing him, talking to him, laughing with him and he is always the person I want to call first when something happens or goes on.  I look at Paris and ironically she is the same way (imagine that)?!  Loved by the girls and treasured as 'that girl' with her male friends.  Every girl should have a Johnny, Tony, Sam, Ed,  and Tom in their lives. These were all friendships that were significant in allowing me to recognize and appreciate the road that led me to love and the ultimate friend for life, Quentin.  I think if 'Made of Honor' had come out back then, I would have considered any of these guys in that role, but I'm so glad that each of them were able to share in the happiness and joy of our wedding day.  Shout out to all my BMF's....my life has definitely been touched and blessed by you in your own way. Love and blessings to each of you!  Friends 4 Ever!

Sunday, September 25, 2011

First Visit Home

Paris came home this weekend.  We were super excited to see her.  The children went wild with excitement.  So much to do, so little time to do it...especially when your splitting that time between two families.  It was just wonderful to have her here.  It made me realize that although I know how much I already miss her.  Having her here was just 'complete'.  Her silliness, laughter and spirit have been missing.  We washed clothes because why pay when it can be done at home for free.  We fixed the printer, backed up and transferred the all the music, fixed the Spotify account, anti-virus situation (isn't great having two IT peeps for parents), switched out cooler weather gear and sent her back with some of Daddy Quentin's White Chicken Chili (which she requested), Chipotle (Thanks Nene) and some Indian cuisine (Thanks Daddy).  One of our main objectives was to find this girl a raincoat so I wouldn't have to hear how she went to class and it wasn't raining and she left class and got soaked or it started raining as I was going to class and I had to decide between running back for an umbrella to save the hair I just did or be late for class.  The hair took a hit.  Good choice girlie, but you've gotta hate it.  Believe it or not finding a suitable raincoat was a challenge.  We visited several places before finally finding one.  So if I have to hear about her being wet and rained on again, it's because she failed to prepare or be prepared.

She hasn't been gone long and but I already miss her all over again.  I made sure to hug her extra good and tight to last until she is here again in a few weeks for Fall Break.  It's funny how you are so excited to have them come home and they are even more excited that other friends are home and everyone wants to connect and get together and it's hardly ever possible unless someone plans a big 'hey everyone's back on break let's get together gathering'.   I guess we have this to contend with for the next few years.  But we enjoyed every moment we did have.  I'm so proud of my girl and can't wait to jump on skype tonight to chat it up.   

Friday, September 23, 2011

Day 70

 

Our appointment this week was a bit long.  I've been spoiled over the last few weeks of getting blood work done, a quick exam/review and receiving results later in the day.  This appointment took hours and there really wasn't anything out of the ordinary that was done.  Just one of those days where there are tons of people to see and to few people to handle the masses.
 
One of our favorite stops at each appointment is seeing Ms. Roz.  If there was anyone you know with every part of your being is in the right place, it's Ms. Roz.  She is the first person the children see each week.  Ms. Roz check heights, temperatures, lets you know if you need to add some fries with that shake, adorns you with a green bracelet (registration armband) and rewards you with the stickers of your choice for being a good patron.  This week Mireya was up a pound, so no shakes needed. During those few important moments spent with Ms. Roz, she radiates joyful happiness and will always bring a smile to your face with her gentle and loving demeanor.  Reya enjoys seeing Ms. Roz, especially when she has Princess stickers and even if she doesn't she still enjoys it and Hello Kitty will do.  Mireya also got a really cute cap as a part of the ASK Kourageous Kids Program.  They held a 'Hats Off' event where they collected over 1,000 hats representing kids going through treatment.

A few counts are causing some head scratching, but overall Reya is doing well.  That pesky cough has returned on the scene and was bothersome enough to send us back upstairs for another chest x-ray.  The x-ray did not indicate pneumonia, but did show peribronchial cuffing  which they believe is due to a reactive airway.  We have another new contraption to administer medication for this situation and hopefully we'll see a marked improvement before our next appointment.  30 more days and we will reached the 100 day mark. Thank you for your continued thoughts and prayers. 



Wednesday, September 21, 2011

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!










Monday, September 19, 2011

Oh Brother

Our dear wonderful brother, we love walking you to the bus stop in the morning.  We cry and are sad when you leave.  Somewhere between walking back home and crossing the threshold of the doorway our minds are in the zone....The Girl Zone!

As you are putting your lunch box and backpack away, we are putting on Princess dresses and picking the Princess movie of the day. Monday - Snow White, Tuesday - Tangled, Wednesday - Cinderella, Thursday- Aladdin, Friday - Princess and the Frog or something like that.  You have one resource period a day, while we're certain to incorporate reading, music and art on any given day.

There's snack time, lunch time and the 'often resisted' nap time. I know your glad you did away with those long ago. By the time we wake up it's time for our second favorite time of the day, walking to the bus stop to pick you up.  We love that your not to cool to get of the bus with smiles and hugs us.  Hearing all the things you learned and did are fascinating, and we can't wait until we are old enough to ride the bus to school.

For now we'll enjoy hearing all about the adventures of school and we'll keep our fun times and adventures between the us.  What happens at home while your away, stays at home even when you come back.  There are days you are sad because you have to go to school and will miss us, or maybe it's because you think your 'missing' out on all the fun at home.  We won't ever admit, you are! Welcome home oh dear wonderful brother.  The Girl Zone is definitely over when you arrive.  We can now look forward to watching 'Walking with Beasts', playing Dinosaurs and Princesses or having you chase us around on all fours like an indricothere or hyenadon.  Big Brothers Rock!        


















Sunday, September 18, 2011

Family Fishing Fun

The Starlight Foundation is an organization that provides entertainment, education and family activities for seriously ill children in the United States and their families.  Starlight sponsored an event this weekend entitled "Go Fish" for any of the Hemoc Familes that wanted to participate.  Each family was assigned a Fishing Professional for guidance, instruction, baiting hooks, releasing the catch and ensuring you had a good time.  Anyone that knows me well, knows that I heart fishing. The event was held at a well stocked private pond in Hopewell.  There were about twenty families in attendance and drinks, snacks and lunch was provided for everyone.  The weather called for rain most of the day, but 'Go Fish' was a go, rain or shine.  It did rain, but the fish are already wet so it didn't matter to them.  Mr. Stewart was the Fishing Professional assigned to #TeamBolton.  He runs a Charter Fishing business down in the Chesapeake Bay area.

Mere minutes into the fishing excursion, Jalen caught his first fish, a Sunfish (Bluegill/Bream). Mr. Stewart taught him how to bait the hook, cast and retrieve the fish.  The rod was a big as he was but Jalen caught on to reeling them in. We're so glad Mr. Stewart encouraged Jalen to try a regular size rod as opposed to the kiddie rod.  He believed Jalen could handle it and as a result wouldn't have to relearn using a new rod as he got older. Mr. Stewart was awesome.  Jalen is not a big fan of worms, but by the end of the day he was a pro worm handler and a pretty good angler.  He caught about eight fish (Crappie and Bream) in total and was so excited about his fishing adventure.   Daddy didn't do so bad either, he caught about six fish (including one deemed photo worthy by the coordinators).  We'll have to see if that photo shows up online or if we can get a copy of it. Quentin really had a good time too.  As for Mommy the fishing enthusiast, she'll have to wait until next time to catch a fish.
 
Starlight and the sponsors of this event gave each little angler a bag of goodies and their very own fishing rod.  Jalen woke up this morning asking if we could go fishing.  I love it!!  Thank you Starlight Foundation!  Thank you to Fishers of Men and the Parks and Recreation Professionals that made this happen.  Time to get fishing poles and licenses for everyone so we can go out and enjoy doing it again and again.  One step closer to camping and the Bolton's Great Outdoors Adventure.   




Tuesday, September 13, 2011

Life Threatening & Life Loss

 A life threatening illness and/or it's diagnosis will instantly throw your life into a tail spin.  Week in and week out, I see so many lives that have been altered by aplastic anemia, sickle cell anemia, leukemia, hodgkin's lymphoma, neuroblastoma and other childhood cancers and blood diseases.  I see very innocent, yet courageous, kids who are fighting for their lives and parents that are doing all they can to take care of them, provide the best medical care they can and give them some semblance of normalcy.

I love Mireya and I know we are blessed.  I believe with everything in me she is cured and we will continue to reach milestones and take strides over hurdles until we reach the end of this race victorious.  I spent most of the night crying my eyes out as I learned through little Emily's Mom of two little angels that lost their battles this week to cancer.  One is a beautiful ten-year old girl named Faith, who like Mireya, loved all things princess and was also dubbed a 'Warrior Princess'.  The other, an adorable five-year old girl named Gabby who just after three short months passed away from brain cancer.  I don't know either of these families but my heart is broken for them.  I can tell from their pages and sites that these precious little lives have touched and reached many.  I didn't get much sleep and I've been consumed by the pain I know these families are going through.

There is nothing that prepares you for the diagnosis of a life threatening illness and certainly not for the loss of your child.  Hug your child(ren) tight, tell them you love them and cherish every moment you have with them.  The good ones, the bad ones, the ugly ones and everything in between, regardless of their age.  Make those wrongs right.  Tomorrow is not promised.  My personal prayer is that everyone know Christ as their personal savior because outside of the life we are not promised on earth, we are promised eternal life with Christ.  It's a simple confession.

Lord Jesus, I believe You are the Christ, the Son of the living God and that You died on the cross for my sin. You say in Your word that if I confess my sins and ask forgiveness, You are faithful and will forgive my sins and remember them no more.  You will not hold them against me and You will give me everlasting life. Come into my heart, I receive You now and make you the Lord of my life.  I thank You for the blood You shed on the cross just for me.  In Jesus name, Amen  

If you said that prayer, it's a blessed assurance!  If you're not at a place to do so or you don't have full understanding of what it is to be a Christian and have a relationship with Christ, I encourage you to get connected. I'm not the officiant on Christianity, but I am counted in that number and I love the Lord with all my heart, soul and strength. I don't know where I would be without him in my life.  I don't know how I would have endured all that has transpired in our lives this year without Christ in my life.  There is so much more I could go into here, but let's keep it simple and to the point. My heart has been so heavy.  I don't take this lightly, it is extremely important to me.  We all have faults and no one is perfect.  We miss it some times, but God forgives us.  He extends his grace and mercy to us beyond what we deserve, but that's the kind of God he is. God is love and I strive every day of my life to share and extend love to others and in turn I have been so fortunate to be on the receiving end of God's love for me and my family exhibited through the hearts and kindness of so many.

My heart goes out to these two families who have lost their precious little girls.  My thoughts and prayers are with them as they find the strength to endure this.  Live your life intentionally, let go of things that, in the grand scheme, just don't matter!  Don't sweat the small stuff, be thankful and give thanks for your life and the lives of those you care for so dearly.  Smile (your on Candid Camera), be kind, show love and most of all, have compassion for others because you never know what someone else is going through.  You have the power to make a difference!

Sunday, September 11, 2011

Back to School

Jalen started school this week.  School was closed several days due to the hurricane.  Classroom notifications literally came out the day before orientation last week.  It was fun to message, text and check Facebook to see whose child was assigned to what teacher.  Jalen only ended up with two former classmates, both he liked a lot and had the chance to spend time with over the summer.  I couldn't believe not one little girl from last year is in his class.  He was sad that his favorite two girls would not be with him this year.  I'll miss their sweet faces and beautiful personalities too this year, but we now have 21 new friends to make this year.  I've heard nothing but great things about Jalen's teacher and we enjoyed meeting her last week.

We had the opportunity to communicate about Mireya's health and our concerns with illness and hand washing in class and just hoping she would help us out as best she could.  Both she and the principal were fabulous.  They had a brief sit down with the school nurse and formulated a letter to the parent's in Jalen's class about the importance of hand washing and kids staying home if/when they are sick, especially the risks due to Mireya's suppressed immune system.  Jalen was not named in the letter, but parents were informed of a 'classmates' situation and the importance of maintaining as healthy a environment as possible so the sibling's health and progress would not be compromised.  Kudos to the Teacher, Principal and Nurse for understanding how important this is for us and taking that extra step to ensure parent's were also aware.  Knowledge and awareness is half the battle.

This is always that week of getting back into the groove and resistance.  The girls want to get on the bus and Jalen wants to stay home because he thinks the girls are at home having more fun than he is.   Overall we've had a great week and we're looking forward to an awesome school year. 

Saturday, September 10, 2011

On Track

On the grow and still blonde in some areas
Mireya's appointment this week was quick, fast and without major issue.  She's gaining weight, full of energy and and her counts are good.  Even that lagging magnesium is coming up.  For some odd reason her tacrilimus level did not register even though she takes it twice a day.  Tacrolimus is used to prevent transplant rejection because it suppresses the activity of the cells in your immune system that would normally attack the transplanted tissue.  We'll check that again in about 10 days.  We also got through a dressing change without issue.  I've gotten very good at changing her dressing each week.  I swore I'd ride out the nurses changing it for as long as I could and honestly they still ask and I politely tell them I'll do it at home.  It is still hard for me to look at this contraption literally shoved into the jugular vein in her neck, but it's made our lives so much easier and I have the greatest appreciation for that.  Mireya still gives up a little noise when I have to clean the area, but it's nothing like when they do it in the clinic and she tells me how proud she is off me when I'm done.

Reya's hair is starting to grow.  Each day there is a little bit more than the day before.  Of course we make a big deal about it and she continues to ask me if it's growing like Rapunzel.  I tell her it will be back before she knows it.  The Princess Aurora band aid cures all things, even a rambuntious little girl, full of energy that bangs her head on the edge of a door.  Thank God her platelets are almost 300k.

Say an extra prayer for Emily and her family this evening.  Emily was admitted to the Bone Marrow Unit for her second stem cell transplant.  Emily was diagnosed with neuroblastoma a few days before Christmas and she has been fighting every since then.  Nothing is to difficult for God!  He is able to do the miraculous and that is what we are believing for.

It's Childhood Cancer Month and there are many activities going on this month to bring awareness and support to cancer and kids. Hopefully you were able to enjoy and support one of the many 'Cookies for Cancer' locations today.  Connor's Heroes will be sponsoring Diggity Fest on Sunday, September 18th at Westchester Commons.  Tickets are still available for this awesome family event.  Richmond's own Diggity Dudes will be in concert along with Hope Harris and Dan Zane.  For more info click here http://diggityfest.com/

We continue to rejoice in the progress Reya is making and we remain prayerful for our friends and all the kids we see in clinic each week. Praying for others is vital to our own spiritual growth.

1 Thessalonians 5:11 Therefore encourage one another and build each other up, just as in fact you are doing.

Wednesday, September 7, 2011

Count Your Blessings

I had the awesome opportunity to speak with a lady I'll call Ms. Caroline.  Ms. Caroline saw the 'Acts of Kindness' piece on Channel 12.  She contacted my church with the desire to get in touch with us.  Over 40 years ago she was diagnosed at age 7, with Aplastic Anemia.  She 'happened' to catch the 'AOK' segment and was instantly reminded of the time in her life where everything changed for her and her family.  She and her family were on vacation when she began to have unexplainable bruising all over her body and she was experiencing external bleeding.  Her family cut their vacation short to get her to the hospital to figure out what was going on.  Her family was told she had Leukemia and they should take her home and make her comfortable because she would likely die within two weeks.  Aplastic Anemia is not a cancer, but it behaves very much like one.  At the time Ms. Caroline and her family lived in New York, but were referred to a hospital in Boston that had experience with Aplastic Anemia.  This hospital disputed her original diagnosis of Leukemia and they proved to be a lifeline for her.  She and her family had to travel to Boston every week.  At that time a new drug, Cortisone (a steroid) was introduced on the market that literally saved her life. 

Week in and week out they traveled to Boston.  There were times her platelets were extremely low and she required blood tranfusions.  At one point her platelets were continuously dropping and there was mention of possibly needing a bone marrow transplant.  Her platelets began to slowly increase and her family never had to consider or endure a bone marrow transplant. Ms. Caroline remembers the isolation, not being allowed to attend school and being tutored at home.  Miraculously within one year of the initial diagnosis she was declared cured.  Initially they were told she would need at least a five year clearance before she would be considered free and clear of Aplastic Anemia.  She returned the following year for a checkup and was released from care and she never had another issue or incident.

It was very refreshing to speak with Ms. Caroline. It was her desire to reach out to be a encouragement and support to us during this time.  She was much to young to to understand the hard facts and logistics of her illness, but she understands as a child how difficult a diagnosis like this is.  She recognizes as parents the toll it takes and how hard it is to watch your child endure this illness.  When she saw the piece on Channel 12 she called her Mom and her mother was able to recount a lot of the details for her.  I began to share the highlights of our journey thus far and it helped her to connect the dots in some of the unexplained areas of her diagnosis. There is so much information that wasn't known or available about Aplastic Anemia back then. 

In most instances, unless its inherited, Aplastic Anemia is considered a idiopathic disease.  Basically the origin of it is unknown. It is believed when you have a series of illnesses/viruses the body is fighting, coupled with medications the body can get confused and begin to fight off all cells even the necessary ones.  Ms. Caroline recounted prior to being diagnosed that she'd had a terrible case of the Mumps.  At that time there were no vaccinations for it, but it made her wonder during the two weeks her body was battling the Mumps if something similar to this had occurred.  My very intelligent and resourceful husband recalls reading about some strain of a virus or bacteria associated with the Mumps that and other infections that is believed to cause Aplastic Anemia.

Ms. Caroline told me how during her isolation she began to take piano lessons.  Something she could do that didn't require much physically or by way of interaction with others.  She said she enjoyed playing and went on to play with worship groups in her church and she still has the small upright piano her parents bought for her back then. Isolation requires creative ways to keep your child connected and having an activity or something they can look forward to other than visits to the clinic each week is helpful.  Mireya loved taking dance, but unfortunately she will not be able to be in such a closed environment with other little ballerinas.  Piano is one of those things I'd love for all of the children to do, but I know at least one of them will play.  I'll have to look into that.   

I am so happy Ms. Caroline reached out to us.  Her story is incredible.  It's awesome to hear some of her accounts as a 7 year old dealing with a life threatening illness. I don't believe anything 'just' happens.  The fact that Cortisone came out the year she was diagnosed with Aplastic Anemia is not by happenstance. Our paths have crossed for a reason.  The Lord has allowed me to see that this could have been a very difference scenario for us. An early diagnosis, a donor, technology and medical support in the city we live in, programs, a plan, and a successful outcome are all reasons to continue to have a hope and a praise in our mouth.  God is so faithful.  The odds with such a illness are great.  The statistics of getting to this point also have odds, but God is greater than all of them.  Mireya is our 'miracle'.  Mireya means 'miracle' and we had no idea when we choose her name all that was to come.  To us it was a 'miracle' after so many losses to have her.  Miracle has taken on yet another meaning for us.  We believe wholeheartedly Ms. Caroline has been connected with us to share her story and to be a blessing and encouragement to us.  She has lived beyond the few weeks of life they gave her.  She overcame the odds.  It is a blessing to us to 'see' Gods hand at work and we know that he will do the very same for Mireya and that she will have the opportunity at some point in her life to share her story.

We are thankful for God's continued hand of protection upon Mireya's life and physical condition.  She gets stronger every day.  Her counts are increasing each week.  I look back to just 60 days ago and all I can say is 'Thank You Jesus'.  Don't let a day go by without having an attitude of gratitude, without being grateful and thankful for where you are.  Personally you may not be where you desire to be, BUT it could be worse or you could be faced with a situation where you literally have no control.  God is a healer.  God is a deliverer and through every challenge, obstacle or issue that comes to rob you of your peace, health, sanity and well being, He is with you.  Continue to believe and trust him.  Mireya is a witness.  Mireya's life is a testiment of his goodness and we know without doubt he will continue to see us through.

Hebrews 12:2 We must focus on Jesus, the source and goal of our faith. He saw the joy ahead of him, so he endured death on the cross and ignored the disgrace it brought him. Then he received the highest position in heaven, the one next to the throne of God. (Gods Word Translation)

Sunday, September 4, 2011

Visiting the Isolated & Shut In



We've had a few really fun visits over the last week.  Our friends the Woods are in town and it goes without saying that we will find our way together before they hit the road.  Rebound and recovery did not stop the visit this go around.  Technically we did see one another, but so much is going on in both our lives, we just needed to connect and catch up.  

Derek has been one of Mireya's favorite people every since she was a baby.  Reya would allow very few people to hold her, but Derek was one that she would always open her arms to.  They had a very special bond, but haven't seen each other in such a long time.  Well time and distance didn't diminish that connection. Within no time they were connected at the hip, which little Ms. Nadia was not amused by in the least. There is always lots of smiles, laughter and comedy when we get together.  We miss having them here.   The parameters of the Military Life have seemingly changed, or perhaps it's just that I was not all up in the flow since I was just the military brat (i say that affectionately).  We are praying and believing for God's best as they prepare for the next phase of life in the military.  They joined us for the dance par-tay and the girls have inducted a new princess to the crew...little Ms. Nadia.  We had such a great time hanging out with them. 

We also got to hang out with our friends the Yangsters.  Our kids love, love, love getting together. The summer has gone by and we've only seen each other a handful of times. We grabbed their favorite chinese noodles (lo mein) and hung out for the afternoon until sweet baby girl Quinn was ready to nap.  Jalen and Tien were fully engaged.  They both love all things Star Wars and Legos so they had plenty to keep them occupied.   I don't know who was happier me or the kids.  Care and I sat and chatted.  We laughed, we cried and I got two baskets of laundry folded.  Now that's productivity!  It was so great to see Reya and Mays play.  She loved every minute of it and I loved that she actually had 'play time' with one of her friends. We've been so guarded with visits (rightfully so), it was so good to make arrangements for this time, mask, sanitizer and all. 

Saturday, September 3, 2011

On the Radio

oh, oh, oh, oh (sing it Donna Summer). We had a great time at the Children's Hospital of Richmond for their 2nd Annual Radiothon with Big Oldies 107.3 and 98.9 Liberty. Mireya threw on her Maxi dress, glittery flip flops and asked for her matching pink princess tiara cowboy hat. It was truly a vision of 'all girl' fun. Quentin and I had not really discussed what we wanted to talk about up until that point, so as we drove over to the hospital, we threw around a few things we definitely wanted to share if given the opportunity. We arrived and enjoyed some some goodies provided by Moe's Southwest Grill Thanks Moes! We had the chance to meet and speak with the Hospital organizers and then very briefly to the DJ for a quick Q&A before we were 'live' on the air.

The time went by so quickly, I honestly don't remember much of what we said, but #TeamBolton tag teamed it and the goal of 5 calls for our time slot was surpassed. Everyone told us we did a great job on air. We were happy to have the chance to share Mireya's story, but also to highlight how wonderful Children's Hospital has been to and for us throughout this entire journey of Mireya's illness. Thank you to those that tuned in and a special 'thank you' if you were able to make a donation for this awesome event. Over $132,000 was raised, all of which goes directly to the hospital to continue being a blessing to us and so many like us that also have a story and a journey.


Friday, September 2, 2011

Smooth Sailing

Operation "Eliminate Pnuemonia" is in effect. Reya had a great appointment with the respiratory therapist. He loved that she 'dressed' up for the occasion. A fluffy princess tulle skirt and equally flashy rhinestone filled twinkle toes.

I was a bit concerned about the treatment based on all the precautions, but Mireya did great. The therapist was in awe of how well Reya did. She is our Warrior Princess! The process took about an hour and a half but mostly due to coordinating the dosing with her physicians. She had no issues with how the medication was administered or any immediate effects from receiving it. Mireya has been on an antibiotic for this terrible cough for a few days now and it is beginning to clear up. Thank you Lord! We will be scheduled for this respiratory treatment every 28 days until further notice. I'm believing it will continue to be smooth sailing with no issues.

Thursday, September 1, 2011

Sunday of Summer




A friend of mine recently posted on Facebook that August is the 'Sunday of Summer'.  A perfectly coined phrase, that is so true. This has been all but a normal summer for us.  Summer time is truly our fun time.  We were sidelined and missed doing so many things, BUT I'm so thankful this summer for a diagnosis, the power of prayer, a donor match, for capable and caring hands to oversee this medical process, the ability for either of us to be at our daughter's bedside every day, meals to feed my family whether we were at home or at the hospital, cards, care packages, phone calls, text messages and emails of support, seeds sown, playdates for Jalen and care for Makinley that allowed us to attend to the business at hand.  I'm grateful for Mireya's phenomenal progress and the things we 'have' been able to enjoy as a family despite the circumstances.

I don't know where I'd be without friendship, family, or my husband.  You will never know the magnitude of how much you've blessed us.  There are no words.  Most importantly we'd be nothing without Christ at the center of all of this.  His love for us is so tremendous!!!  As the 'Sunday of Summer' ends we look forward to reaching our '100 Day' mark and ultimately one year from today looking at a totally cured and healed little girl who will have the ability to do 'EVERYTHING' she couldn't do this year and even more!  Funny how life can change in an instance.  The most beautiful part has been enduring these changes surrounded by unity and love. 

Hebrews 10:23-24 Let's keep a firm grip on the promises that keep us going. He always keeps his word.  Let's see how inventive we can be in encouraging love and helping out.




Tuesday, August 30, 2011

Day 50

Another day of great counts. Mireya's white blood count has almost doubled, her red count is above normal and platelets are through the roof. Thank you Father for increase!!! The Doctors are so pleased with Mireya's progress. She looks great, has tons of energy and with these types of numbers you'd believe she is further along in the process, but we still have so much to be mindful of. 50 more days and we're on a new wave of freedom. Her meds are still being tweaked. There are a couple of counts we'd like to see in a more comfortable range. That pesky cough has progressed and caused a bit of a stir with her physicians. Reya had to get a chest x-ray today to rule out pneumonia, and she was given an additional antibiotic as a precaution.

She has been on a medication for a few weeks that helps to diminish the possibility of pneumonia but it has been making her sick and she's been dealing with some of the less pleasant side effects of that drug. We will be going in later this week for a pulmonary treatment that can be scheduled once a month with a pulmonary therapist. After speaking with the therapist about how the medication is administered, it could be tricky, but we'll give it a try and pray that it gives us greater results physically. We'll monitor this cough and continue to look out for other markers for issues, but Reya is doing better than great! Her doctors said if the counts continue to rise at this rate we can be seen even less in the clinic.

School will be starting next week, we had hoped that the girls would be going to a preschool program together a few days a week. Unfortunately Mireya cannot go to school for the period of one year post transplant. To avoid any issues we've made the decision to keep Makinley home as well. Jalen being back in school (and exposed to pretty much everything) is definitely something we'll have to stay on top of. We are so excited that ASK has a dedicated preschool program for the kids of Hemoc. The program is one day a week and includes siblings. ASK recognizes the need for supportive programs for young children whose preschool or kindergarten experience has been postponed or interrupted during medical treatment. First STEP offers an individualized early childhood educational program for ASK Pediatric Hematology/Oncology Clinic patients and families. First STEP is designed to meet the unique educational, social and emotional needs of young children with chronic illnesses as they go through the process of healing. This program is provided though the partnership with First Baptist Weekday School. I'm really happy the girls will have this opportunity for socialization, learning and fun.

Monday, August 29, 2011

Irene & Isabel







Watch out for those hurricanes that are female by description and start with an 'I'. Irene rolled through the East Coast and she caused some drama. The winds picked up, the power went out and trees went down all over town. We're thankful for favor through the storm. Our neighbor has a generator and came over to offer us the opportunity to plug up our refrigerator and few other smaller voltage items. It was a great relief to be able to save our food and have light on when needed. Big props and 'thank yous' to Westbury Pharmacy for braving the early hours of the storm to deliver Mireya's medication. Phone service was very sketchy, but I managed a few phone calls and text messages, but really enjoyed catching up on my Nook books. We listened to the radio for updates and coverage of the storm, but switched it up and got the nightly dance par-tay in. We had a variety of things to keep us entertained. The kids enjoyed board games, play dough and good ole' educational fun on the Leapsters for the mad sum of 12 AA batteries.

Jalen has become fascinated again with dinosaurs after a two year hiatus. You will often find him running around on all fours as if he's velociraptor or gallimimus or any of those other fast moving dinosaurs, and he is quite fast at doing it. Daddy and Jalen had what I'll dub a i-ran-ta-sauras race. Daddy had to show him that he 'could' do that too if he wanted to. It was hilarious and caught on tape!! We have a gas stove so cooking was not a major issue. Noodles, spagettios (Mireya's new favorite) and hot dogs were favorites for the day. The night ended with a big sleepover between the bed and futon. Overnight, I heard a tree drop close by, but it was so dark it was hard to figure out exactly where it fell.

Hearing that tree fall took me back to several years ago when Isabel came to Richmond. We were living in a different part of town at the time. She was a much more fierce storm than her home girl Irene. Isabel wrecked shop. Not only did she shut down power for days, but she shut down highways, byways and most any other way you wanted to go through. I'll never forget the sound of trees falling all around us. It was very frightening and unnerving to see trees snapping in half or coming up at the root. After a day or so the neighborhood had several block parties. Neighbors were firing up their grills and cooking out for anyone and everyone that was interested in stopping by for a meal. Clean up from that storm took quite a bit of time. It was big business and very lucrative for companies that did tree work or were equipped to help with the debris or damage from Isabel.

We woke up to chain saws buzzing all around us. I even saw a young man riding his bike with a chainsaw in hand looking to 'help' and 'earn' some cash at the same time. 85% of the city lost power and many are still without it. It's so easy to take the simplest necessities for granted. Irene came in swiftly and then left us with a beautiful day of sunshine. Sunday morning reminded me of time spent at my Godmother's house as a child. Blueberry pancakes and bacon for breakfast. No television, no hustle and bustle, just a quiet stillness accompanied by a soft, gentle (and much needed) breeze.

We took the opportunity during the daylight hours to do some tasks that were made for days that you had nothing but time on your hands. We were able to get some things accomplished and organized as we waited for our electricity to be restored. It is estimated that our power will be back on by Wednesday afternoon. Prayerfully it will be on before then. We are so thankful for God's hand of protection over us through and during this storm and we continue to pray for everyone's safety.

Psalm 4:8 I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety.


Sunday, August 28, 2011

Man Down Situation

Irene has come and gone. She left quite a mess here in VA. We have been without power, but all is well. We are together and safe. We pray everyone else is safe and well also. This is my first mobile post (isn't technology grand). I have lots to share and hope to be back to full-status blogging soon. Take Care & God Bless!

Thursday, August 25, 2011

God's Abundance

#TeamBolton will be featured 'live' on the radio this week. We've been asked to participate in the 2nd Annual Miracle Children's Hospital Radiothon. VCU Children's Hospital has been a blessing to us and we are super excited to share Mireya's story and bring awareness and support for such an awesome event. If you are available on Thursday, September 1st @ 1:30pm, tune in to 98.9 Liberty or 107.3 Big Oldies for #TeamBolton's live interview.

Some other exciting news we received this week is Mireya's physicians submitted her name to 'The Make A Wish Foundation' and as a result she is eligible to receive a wish. I had imagined this organization as one for terminally ill children, but they actually grant wishes for children with life threatening illness that require treatment for 6 months or greater along with some other medical criteria. I never would have thought of such a thing, but I'm so happy that her doctors did. I'm elated that as a result of this illness, treatment and year long road to recovery that she will have something so very special arranged just for her. Something she can remember and hold onto other than hospital stays, hair loss, sickness and isolation. I don't know all the stipulations and guidelines of granting a wish, but she has two volunteers that will be meeting with her in the next week to begin designing her wish. I'm still in awe of this news, but so happy for Mireya.

#TeamBolton was contacted last week by a company that has positioned themselves to be a blessing to us. There were several initiatives we were given to sufficiently provide a environment conducive to Mireya's health and recovery. Some of those items have been sidelined at least until we get outside of our 100 days and others were simply a matter of finances. God will make a way. He will position those with a heart to fill 'a need' with the opportunity to be the blessing. Within days of speaking with this company, they purchased and shipped the recommended air purification system to us. It is similar to the system used in her hospital room on the Bone Marrow Unit. We now have an assurance that even with the carpet in her room and other pollutants that she will have little to no issues because of the high efficiency of this system. There are no words for how incredible this is. We have some other items to be addressed that this company is committed to helping us with....speechless, but so appreciative.

Thank you to so many of you that have been a blessing to us through prayer, meals, donations, gifts for the kids, household help and the list goes on. We pray that your kindness will be returned to you and may you be blessed with all things good.

Philippians 4:19 And my God will meet all your needs according to the riches of his glory in Christ Jesus.

East Coast Earthquake

Wow...5.8 on the scale. Suddenly the house was rocking and swaying. I had absolutely no idea what was going on. We live on a golf course and during a really good thunderstorm we can 'feel' the roll of thunder along the course, but this was different. I ran to the window to make sure a storm had not snuck up on me. It sounded like one of those instances where you load your washing machine unevenly and it starts making that noise that says 'come and fix this problem...NOW,' that wasn't it either. I ran upstairs and my son said we were having a 'earth tremor'...thank you Meteorologist Jalen. I thought 'could' this be an earthquake? The bookcase was shaking, my bed was jumping up and down and all the while little Kinley-locks was fast asleep in her bed dreaming of 'just right' porridge. It was like I was standing in the middle of a john boat as the tide was rolling in.

I turned on the TV and the soap operas were in full swing. I was surprised there was no high pitched warning or alerts scrolling at the bottom of the screen. I jumped on FB and realized I was not alone and that friends as far away as NYC had felt it too. I called loved ones to make sure they were alright and fortunately everyone was ok. As a result of the crazed gunman fiasco at Discovery, they have a new alerts system, so I was fully aware of what was going on with my sister via text and phone messages. I couldn't imagine living out West where this happens more frequently and at higher magnitudes. There were at least three aftershocks experienced well into the night. None of which I felt. The media circuits spent the remainder of the day giving us helpful information on what to do (or what we should have done), what to expect (cellular and land line phone service was temporarily interrupted) and showing us some areas that did have a considerable amount of damage done as a result of the earthquake. My house is still standing and I'm grateful it was not a worse situation and we are all safe.

Psalm 121:7 The LORD keeps you from all harm and watches over your life.

Wednesday, August 24, 2011

The Irony of it All

One of the most amusing parts of this entire ordeal is not only is your child diagnosed with a life threatening illness but there is a hefty price tag attached. We are so fortunate to be in very capable and qualified hands. The medical team of VCU Children Hospital's Pediatric Hematology/Oncology Department are incredible and worth every penny, but hear my heart when I say dealing with the ins and outs of the diagnosis, associated treatment, and ongoing ups and downs of recovery is enough, but to also be tasked with financially handling the mounting medical bills is enough to buy a lottery ticket and 'pray' to win (i know the irony of that). I mean the odds of Aplastic Anemia are worse than the odds of winning the lottery. Go figure.

Someone recently asked us about the amount of medical bills have. We've paid a few and based on what we've received to date we have a few thousand dollars of out of pocket bills to pay. Well after my walk to the mailbox today that number has tripled....Yikes! The medical services are exceptional, but the billing system is obviously lagging. I received some bills today from some of our initial visits in May. One in particular made me want to take a few hits off my inhaler. For three days of meds, labs and scans it was 30k. We have good insurance and will only have to pay a portion of it, but if I calculate that portion times the 60 days were in the hospital divided by three, it distresses me. We also have our 'Super Hero' brother's medical procedure to throw in the mix too. As incredible as an 8 for 8 donor match is, can I get some sort of discount?

As you can imagine my bright attitude was suddenly dim but I have repeatedly told myself that the same God that has watched over Mireya and replenished her health is the same God that will see us through our financial responsibilities. I don't know, but God does and I will continue to trust and believe because worrying adds nothing to this situation. Matthew 6:33-34 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

You will likely never hear me mention the financial aspect of this journey again (I know never say never), we all know medical care costs and it will continue to. I'm very happy we have health insurance and the ability to have our daughters medical needs taken care. I'm going to have to pray and sleep on this one. Tomorrow is a new day! Dear Lord ~ I pray I don't walk to the mail box tomorrow and get another bill like today. Amen!