Sunday, January 27, 2013

Hoo's for Mireya's Miracle

A few weeks ago a beautiful young lady came into our lives, she was crowned Ms. Chesterfield 2013 and Miryea will serve as one of her Princesses this year.  Her name is Kiara Williams and she is a 2nd year law student at UVA.  Kiara sent me the sweetest message a few days after the pageant to express how she was touched by Mireya's story and how much she looked forward to spending time getting to know us better.  Ms. Chesterfield's charity of choice is Children's Miracle Network, a organization we've worked with to support and bring awareness to.  I had the opportunity the evening before the pageant to share a quick excerpt from our journey and how much Children's Miracle Network and CHOR has meant to us personally.

Kiara sent me a second message sharing her desire to do something something specifically for Mireya's Miracle.  Kiara will be hosting a  'Hoo's for Miracles Miracle' fundraiser this week at UVA.  Kiara is a former cheerleader and the UVA Cheerleaders are also going to help her raise money for Mireya. I was deeply touched.  Again the hearts and love of people coming together to make a difference in the lives of others.  We still have treatment to complete, as with everyone in the midst of overcoming a life-threatening situation in a child, even with insurance, medical bills and expenses can be burdensome.  As with every single mission of love and support, we're grateful and very thankful.  There really are no words to express our sincere appreciation.  It wouldn't matter to me if they raised $1, the thought, the love and the desire of her heart have blessed me immensely.
Glitz, Glam & Hearts for Mireya's Miracle

We have some Hoo's in the family (specifically a Law School Grad), so this is really special for us as a family.  Kiara's fundraiser will begin on tomorrow and run all next week.  I'm excited and proud about what young people can accomplish when they put their hearts and minds to something!

Thank you Kiara & UVA Hoos, with Love #TeamBolton

Friday, January 25, 2013

Done & Gone

It's Time
The removal of Mireya's line was successful and without issue.  We arrived bright and early and waited through the course of the scheduled procedures until we were pulled from the queue for our turn.  Reya has been excited for the last day at the prospect of getting this line taken out....but when we got to the floor to check-in, she was incredibly serious and quiet.  I asked her what was wrong and she said she was afraid of getting a shot.  I assured her she would be ok and thankfully they anesthetized her via the line and then placed her IV.   Mireya tolerated the anesthesia without a problem. There was significant scar tissue, which we expected because it's been in for almost two years...but 'thank you Lord' this part of our experience is over.  Bathtime was greeted with sheer excitement.  Even though we still have several days before she can be submerged under water, filling the tub up more than a few inches was a treat!
Waiting our Turn

Sleepy Medicine Worked #sleepingbeauty

Oreos for Breakfast #earlyprocedureperks

I'ts gone!
Sidenote..  My kitchen is a total mess due to a line blowing out under the sink yesterday.  Water damage is a beast.  Half of the kitchen has been completely demolished (the most important side...sink, dishwasher, trash compacter, cabinets and counters)...for now we're toughing it out with take-out, finger foods, frozen meals and most importantly paper and plasticware. The enemy thought he was going to 'steal' every ounce of joy we had in anticipation of this milestone, but sorry I'm still smiling with my joy intact. Thank you for your thoughts, calls, texts and most importantly prayers.

Wednesday, January 23, 2013

Amazing Grace

We received a call this afternoon from our Nurse in clinic to schedule the removal of Mireya's line.  It will be taken out on Friday.  Tears filled my eyes and I wanted to jump through the phone and hug her tight.  THANK YOU LORD!!! There are no words to express our happiness. After 22 months, Reya will finally be free of this Hickman Line. I remember the day she got the line placed.  It took a lot for me to get comfortable seeing it let alone take care of it everyday. I will not miss that responsibility at all.  
It is a true blessing Mireya never had a infection or any complications with her has served us well.  The procedure will require her to be placed under anesthesia, but the process should be quick.  Keep Mireya and everyone involved in the procedure in your prayers.  Thank you!!!

Monday, January 21, 2013

We're so Excited

And just can't hide know the rest (Bless the Pointer Sisters).  Mireya has been doing fabulously.  Her counts have remained stable and were the best they have been collectively in the last 22 months.  God is so faithful!  She no longer has to wear a mask! I loved seeing Reya's face light up when she heard this.  She was so excited she grinned from ear to ear. We've also eliminated a few more medications, so we're down to just a handful now.  Mireya will physically be able to go to school in March AND she will also be getting her line removed soon. She also took the last of her immunosuppression meds this weekend. That has been a frightening prospect for us.  When she was taken of the Tac last year, the remaining cells in her body 'remembered' their original assignment and started attacking and destroying 'all' of her cells.  As a result of her bone marrow's struggle to create new cells, she became dependent on blood and platelet transfusions.  Once our remaining options were exhausted, it was necessary to repeat the bone marrow process.  This time, we're going all the way...straight to victory!!!  I don't believe he's brought us this far a second time to fail.  My heart skipped a beat with joy that the end is in sight.  We have six, count them 1, 2, 3, 4, 5, 6 more appointments in our active treatment.  Mireya will have to get stuck when her blood is drawn for labs, but what a trade off.  No more contraption stuck in your neck, taped to your chest, hanging down to your belly button.  No more daily flushing of the lines, IV meds, or weekly dressing changes.  Scratch complications or worries about infection via this line off the list.  Hallelujah!  We'll take the six sticks!  Mireya is so happy about this.

2013 is going to be an exceptional year for #TeamBolton!  There are no words to describe how it feels.  During the summer I was riding through our neighborhood and had a revelation.  I smiled (actually chuckled) and said 'thank you God'...'thank you for trusting us enough to walk through this'. I never imagined I would say those words, but I truly believe God knew he could trust us to walk this out with a magnitude of strength because we knew he was our source.  This doesn't mean we're anything super special because God is no respecter of persons.  It also doesn't discount the many times we were alarmed, afraid or feeling low. We knew we had no other choice but to hold on to our faith and God's hand. And with that came a level of peace and assurance that he would see us through.  We've learned these God allowed experiences are not only for us, but for others. The love of God is far reaching...however it reaches or touches you.  We have grown through this process and our faith has increased even more. We never imagined our lives would be turned upside down back in 2011.  We didn't know what we were up against.  We were afraid of this thing we knew nothing about and for our daughter's life, BUT God.  He showed us how much he loves and cares for us through the hearts and love of so many (family, friends, church, community and organizations that have positioned themselves to be a blessing).  You can't imagine the impact or the imprint it has made.  When we didn't have the words, we knew we were being covered in prayer.  That's tremendous.

There is so much God has in store and stored up for us.  You know that saying 'he'll give you 'double for your trouble'...I'm ready, we're ready. We've remained hopeful throughout this entire journey and there are still processes, procedures and treatment to complete, but I'm so excited about the difference all of these things will make in our lives.  As we were leaving the hospital on clinic day, we got off the elevator and Mireya said 'hmmm it smells so good in here' (mind you we came in that same way with a mask and it was a different sensory experience), she just kept breathing in and out deeply with appreciation.  I was tickled for her. She has asked to go outside everyday since that appointment. She has reminded us on several occasions that once she gets her line out she can get in a tub 'full' of water and lay down.  One of my greatest concerns has been during Reya's play time (as normal 5-year old ) that somehow her line would get yanked out of her chest/neck while playing, jumping or by the mistep of a sibling or playmate. I know it's a gruesome thought, but a very real one for me every day. In preparation for her return to school, I've had discussions with her teacher and the Admin Team on how we could handle her recess time without making her feel penalized or sheltered.  She is very aware of it, but I've seen the school yard at recess.  Things mistakenly happen, so how amazing is it that she will have it out prior to actually going to school!  Thank you Lord...we're holding on to your promises as tightly as we've held onto your hand throughout this entire process.  Thank you for your continued prayers. I can't say it enough, there is power in prayer and everything that matters and concerns us, matters to God.

There is no rhyme or reason and some things we will never understand, still and know that I am God...every good and perfect thing comes from God...there is nothing to big or to small for God and with him ALL things are possible.

Wednesday, January 9, 2013

Our Crowned Princess

Mireya really enjoyed her reign as a 2012 Miss Chesterfield Princess. Participating in the pageant this year sort of got lost with so much else going on, and it seems like Pageant day arrived very soon after I got the memo (or at least that's the way it felt).  I was really apprehensive about Reya doing it based on the early onset of flu and her exposure to the crowd, not to mention what to wear!? The attire came together with moments to spare, but because it fell together so beautifully there was no doubt it was meant for Reya to participate again this year.  Thank you Lord for favor!

Reya had a moment on stage where she was indecisive about whether or not she was really going to state her name and age for the audience.  Without hesitation, her outgoing pageant sisters surrounded her, lifted the mic in her hand, whispered some words of encouragement in her ear and in that moment she raised her head and introduced herself loud and clear.  A few seconds after her introduction there was laughter throughout the auditorium.  I missed the gesture, but was later told Mireya lifted her hand to her head, swept it across her brow like 'whew'...glad that is over.  It truly was a endearing moment to witness.

2013 Preteen, Ms, Teen and Princesses
Mireya loved watching the contestants competing for the titles (Preteen, Teen and Ms.) sing, dance, and of course sashay across the stage in those beautiful gowns.  Before the crowning segment, the reigning Ms. Chesterfield, Delesia Watson extended a heartfelt thank you to the Miss Chesterfield Organization and shared her love for her little Princesses.  The girls adored Delesia, there were smiles and tears, but the precious memories they have of the time they spent with her over this past year are memories they will always carry.

Reya, Delesia & Paris
We're excited about spending time with Reya's new pageant sisters (and remaining connected to the outgoing one) and the new Ms. Chesterfield 2013, Kiara Williams (a second year UVA Law student).  We're also really happy to be a part of the bridge in connecting on a greater level with Children's Miracle Network. The Children's Miracle Network is the charity of choice for the Ms. America Organization (Ms. Chesterfield competes for Miss Virginia which ultimately competes for the Ms. America crown and title).  We'll be rooting for Kiara this summer when she goes to Roanoke to compete for the Miss Virginia title.

Special thanks to the Miss Chesterfield Organization...Kyle Grinnage (The Director) and her family have been dear friends to us for years.  Being a part of this sisterhood was one of the many things Mireya looked forward to over this past year.  Her illness and treatment prevented her from participating in many of the events, but those she was a part of were amazing times for her.  She is delighted to be re-crowned as a Princess for 2013.  I mean what little girl wouldn't love to wear a crown/sash while hanging out with other  princesses doing meaningful things in the community and having fun? And believe me....Makinley cannot wait to say 'Hi my name is Makinley Bolton and I'm 4 years won't be long.  I don't think Ms. Chesterfield is ready for it.  Looking forward to another great year!

Sunday, January 6, 2013

Happy New Year

It's the new year.....out with the old and in with the new (or improved). The beginning of a new year is also a time of reflection and one to set or realign goals.  There are so many things I'm looking forward to this year.

This year I expect and am looking forward to Mireya's health being restored 100%. I'm trusting and believing for the health and prognosis of the many families whose lives have been turned upside down over the last year by diagnosis and treatment. It's a difficult space to manage. Maintaining sanity and balance in the midst of treatments, tests, and scans is rough....feeling your emotions, but trying not to feed them is also a challenge.  Faith and prayers makes the difference.  I truly don't know where we'd be without the prayers of so many covering us.Nothing can separate us from the love of God.  His presence is his promise (Romans 8:38-39).  

We're looking forward to a semblance of normalcy being re-infused in our lives. I can't wait for the day Mireya gets her Hickman line removed and she can take a bath in more than a few inches of water, jump in a pool or ride some waves at the beach. I can't wait to see her rejoin dance classes (she LOVES to dance) or the day she will actually be able to attend school in her Kindergarten classroom. Joyous, yet tearful moments because these are simple pleasures we have not enjoyed for almost two years now.

Going camping with my Jalen and cheering from the stands at his first basketball game are going to be highlights this year. Starting an annual Mother/Daughter trip with Paris is on my list of things to do. This will be something large or small, we can look forward to doing each year. My little grasshopper Makinley is ready to take on her own activities too. She can't decide if it will be dance, gymnastics or karate, so for the moment she twirls, flips and has a mean roundhouse kick.

Being a good parent starts with being a happy and fulfilled person. Personally, I plan to take advantage of opportunities and avenues I've avoided or put off. I will also be investing some of my time this year to brushing up on my Spanish. I used to speak Spanish quite fluently, but I've forgotten a lot and definitely need to practice. I'm looking forward to reconnecting with friends near and far. Being the best person and Mommy I can be is important to me. I've learned to take very little for granted and I strive to meet each day with a positive attitude and a thankful heart. Thank you for your kind words, thoughts and prayers....they keep us lifted.

Excited about 2013.....