Share Your Story this Season

I never imagined myself at a church like Hill City Church, but we are thankful that the Lord led us here, because he knew! It truly is a safe place to explore your faith, ask you questions and embrace the love of a community of people who love God, love people and delight in serving Him and others.

This past week we kicked off our first advent season message and I had an opportunity to share a part of the #TeamBolton story (link to full message below). Many of you prayed and supported us throughout our journey over the last 5 years. The series is called 'You're Worth It'.  I wasn't sure how it would all come together, but the team did an amazing job!!! As this piece was shared Sunday, there were moments of true reflection. I cried softly as I was reminded of so many people and their hearts to bless us and it turned into a sob (shoulder shakes and all) and there was not a tissue in sight.  I'll leave that there, it was not pretty.  A visitor shared with me he thought we were all going to drown in my tears before it was done...ok it wasn't that bad, but those were tears of fullness in my heart. Sometimes we don't know why we go through certain things, but this was a great reminder of how we need to trust God even in things we don't fully understand. When you fight to get up each day and keep one foot in front of the other, when you find a reason to smile, although you are hurting, or better yet...when God places someone in your life, your day, your path to bless you large or small, it allows us to experience the fullness of God's love.  It give us hope. I do believe God is always with and around us, he shows himself through creation, through people, words, songs, occurrences and kind gestures.

There is one point during the taping, we were asked to share why we thought we were worth it.  I had to pause, took several minutes trying to formulate a response and instead I found tears and a deep sense of pain and hurt for others...whose prayers were the same as ours, but whose stories ended very differently. Also for the many people in our prayer rotation that are dealing with issues that consume them with grief, pain and uncertainty.  As John shared in the message on Sunday...God never said our lives would be without pain and suffering.  He also did not say that 'this' was the best, but that we are living for what 'will' be the best.  A life with Christ (especially in our lowest places) provides an opportunity for love, hope, grace, joy and peace.

Right now you may not be going through anything, be thankful, but seek out opportunities to help others who are. We are so thankful and grateful for the love, support, thoughts and prayers you gave to us during one of the most difficult times of our lives.

Love God, Love People....Pass it On! 

Oh and if you are in the RVA area you should come visit us at Hill City Church one Sunday...actually you have 5 opportunities to come hang out on Christmas Eve.  Check us out at www.hillcityrva.com

https://vimeopro.com/hillcityrva/youre-worth-it-advent-2016 (Message Link)

Magnificent Grace

Five pictures worth a thousand words each and more.  So thankful for the grace of God that kept us in our right minds and with a measure of peace in the midst of a situation where we were often overwhelmed.  In the words of Marvin Sapp 'never would have made it without you'....we felt powerless, but not without hope, knowing God is/was able to turn our situation around in an instant.  The manifestation was not instant, but we kept trusting and believing and as a result, lives were touched and our faith increased exponentially.

We walk by faith and not by sight ~ the things we've seen and experienced over these last few years have given us a greater appreciation for life and those in our lives, but also showed us to keep things in God's perspective (what does God say about my situation) and to never, ever give up hope.  Mireya is our Warrior Princess, our son our Hero.  Every time we see this beautiful smile and think of his selfless love, it reminds us of God's love for us.  Thank you Father for your faithfulness towards us!!!!

Exodus 23:25 And ye shall serve the Lord your God and he shall bless thy bread and thy water and I will take sickness away from the midst of thee.

The Difference a Year Makes

 

One year....365 days.....ups, downs, tears, joy, regrouping, reclaiming, but best of all.....rejoicing!!  We've reached a major milestone, our one year appointment. It's hard to believe that just one year ago we were being admitted for our second bone marrow transplant.

In the Clinic, I met a few parents new to their diagnosis and the routine.  The Fishbowl was filled with kids receiving chemo therapy and transfusions.  I was immediately flooded with thoughts of the two and a half years of that rotation.  I encountered a parent overwhelmed with concern as their Medical Team gave them the news that a Bone Marrow Transplant is their next viable option.  We had moments to talk and embrace, but I look forward to being able to share (from the other side of the coin) our experience to help prepare and align their expectations.  My heart was also heavy as I noticed the frailty of life in a few of the young patients who have been fighting these illnesses with all they've got. I sadly learned mere days after this visit that one of those precious lives would suffer no more.  It's unimaginable and my heart grieves with this family. 

Prior to this appointment we'd received a letter that the Head of Peds Hemoc would be leaving VCU.  Reading this letter made us sad. Not sad for ourselves but for the hospital.  Dr. Godder is small in stature, but very matter of fact and she shoots it straight.  When your dealing with life and death of a child, you want 'shoot it straight' and give me all the variables (at least we did)!  This woman is a wealth of knowledge and wisdom.  What are the odds that one of the best Physicians in this arena would be 'in place' during our diagnosis and active fight to partner with us and be the overseer of our daughters care? We're sad to see her go, but are happy she'll be closer to her family and continue to be a major force and resource doing something she loves...."bone marrow".  It was bittersweet to have our last appointment with her just mere days before she leaves.  She made a point of coming in to have her appointment with Mireya even after adjusting her schedule to see the remainder of her patients the week before.

Mireya had to have an EKG and a battery of tests/labs completed to monitor her progress and success.  We'll be seen every few months for the next year to ensure Mireya's progress is staying on task. Today we had an unspoken release. The release of emotion likened to when you had your first child and the Doctor handed you a healthy boy or girl and you were overcome with tears and emotion. Mireya is even more beautiful than the day they handed her to us AND (despite it all) her health has been restored.  Reya has been taken off all medications!  She will be able to start getting her immunizations and go to school with no restrictions.  There are several objectives and areas we have to be watchful over, especially given the medications and treatment she's received over the last few years, but we're believing even the slightest of instances will not be on our radar. We continue to stand, trust, believe, and confess  that her body will function as it was created and designed without incident.  

We have met some amazing families and people.  It takes one to know one (and to understand)......our circumstances and situations may be different, but we're all fighting for the same thing.  I'm looking forward to continuing to to serve, support and be an advocate for care and to those organizations/foundations/businesses doing amazing things to make a difference in the lives of others.

Thank you for your love, support, prayers and any/everything that was done to lighten our loads and minds during this process.  Life is good and our best and brightest days are ahead of us.

Total & Complete Healing

Mireya had a great appointment this past week.  Her counts are soaring and holding beautifully.  The best news during that appointment was the results of her chimerism test.  The chimerism testing gives us a specific picture of the cellular composition of the body.  For many months Mireya's was between 30-40 (higher than we were comfortable with) and then sitting consistently in the low 20's.  We had come to the realization that perhaps the mix of her cells and Jalen's cells would just co-exist and stay around this point.  The latest test showed that Reya's cells were 'undetectable' *praise break*. The Head of Peds/Hemoc said when she saw those results pop up on the screen she was 'speechless'.  This was a greater outcome than she expected for Mireya!!!!!  So to quickly put this in perspective, if you recall when Mireya was taken off her immunosuppression meds following her first transplant, there was a small percentage of her own cells that remained in her body which were not destroyed by the chemotherapy.  Those cells re-emerged with a vengeance and started destroying all the cells in her body, resulting in the dire need for another transplant (thank you Lord for Jalen!) Those cells no longer EXIST in her body.  This is what we've prayed, trusted and believed God for.  The child with the issue of blood...totally and completely healed. God is so faithful!!!!  ALL things are possible for them that love the Lord.  Don't give up hope!

We could not have gotten to this point or place without the love, support and hearts of many....for that we are eternally grateful.  There is no one I could have walked with or made it through this journey with, other than Quentin.  Support, love, tears, laughter (to keep from more tears), a covering.  We drew strength from each other, we stood 'together' in faith, we prayed long and hard 'with' one another and 'for' each other through it all.  Our faith has increased to another level and we've personally been touched by the power and unity of people (family, friends, church family) and community. Thank you for standing with us, for following our plight, for all that you've done to lift our burdens and to add joy and happiness along the way (this blog has been viewed and shared among 57 different countries)....simply amazing.  We are inspired and extremely proud of the strength of our children (those little lives we fought so hard and endured so much to bring into this world).  We continue to pray and trust God with all he has for each of them....our blessings....our gifts.

Our dreams are big, our future is bright, our desire to serve and bless others has continued to grow.  God knows our hearts. So now we recover, we reflect, we revisit all the things we've desired to do that have been placed on hold and we start filtering those things back into our lives.  Simple pleasures to enjoy and some long awaited things to plan for.  Mireya is super excited to finally get to do something she has not been able to do for over two years.  She received the clearance to go swimming, so this summer...IT"S ON!!!!  We will return to clinic in about month or so for our one year visit and exam.  This will include some extensive testing that will provide the necessary benchmarks as we transition into the maintenance phase of treatment.

Words cannot express our happiness, appreciation or thankfulness.  Thank you for walking with us, thank you for trusting with us, thank you for praying with us and believing with and for us.

Matthew 10:27 What I tell you now in the darkness, shout abroad when daybreak comes. What I whisper in your ear, shout from the housetops for all to hear.  

We made a decision to trust the word of God, despite what it 'looked' like or 'felt' like. Our faith reassured us that Mireya's health would be restored and after almost two and a half years of a life in limbo I'm shouting *in my loudest voice ever* GOD IS SO AMAZINGLY AWESOME (yes all caps is appropriate here)!!!

It's a Celebration

Beauty Station Visit

Which camera are we looking at?

In all the fun upstairs, Jalen has lost his shirt and tie

Dancing with Sidekick 

Daddy and his Princess

Three Amigos..Jalen found his shirt and a cool hat.

It's a Wrap....Good Night

Every day is a celebration.  The Heroes Ball was the first of many celebrations. #TeamBolton had so much fun.  It was a incredible evening with an amazing group of people coming together to raise awareness and funding for Connor's Heroes.  It's hard to put into words want Connor's Heroes has meant to us over the last two years.  The calls, visits, love, support, events, programs and opportunities to create memories and enjoy 'fun' moments as a family have been priceless. Connor's Heroes is an organization that understands how illness alters the life of the entire family, coupled with the challenges and struggles that accompany balancing life and treatment. I want to do my part to ensure they are able to continue touching and reaching the lives of families touched by cancer and life threatening illness.  Be sure to visit www.connorsheroes.org to see how you or your organization may be able to support the vision and mission.

Red was sort of our family themed color of choice.  I chose red because it was a statement of conquering the issue of 'blood'.  Mireya choose to wear white, which was very fitting. The little girl with the 'issue of blood', washed, cleansed and walking in victory....nothing but the blood of Jesus. It took faith and determination for the woman with the issue of blood to receive her healing. She said 'if I can just touch the hem of his garment, I will be made whole'.  This has been our stance and prayer for over two years, that Mireya would be made whole, that her health would be restored without issue.  We're thankful and grateful that through it all...the good, the bad and the questionable that God has carried and seen us through. We had no control, but our faith told us to hold on and trust God. Don't stop believing.....hold on to the promise.  Mireya has three months left in her active treatment and she is doing tremendously.  

What can wash away my sin?

Nothing but the blood of Jesus;

What can make me whole again?

Nothing but the blood of Jesus.

• Refrain:
  Oh! precious is the flow
  That makes me white as snow;
  No other fount I know,
  Nothing but the blood of Jesus.

A Bum Wheel

My week has consisted of being stretched out on a sofa with restricted movement, slipping in and out of a painkiller haze. So thankful for a husband who has taken 'extra wonderful' care of me, for my family and friends that have stepped in to be of assistance when needed.  It's been rough.

I had hoped to never have to endure another knee surgery, but this past week I had my sixth knee surgery.  Five scopes and an ACL reconstruction (attributed largely to my love of sports). This go round I had some meniscus tears to repair, along with some clean up to get done.  That was the plan until they got in there and saw the complete madness that has been going on since my last surgery.  It was a lot worse than originally expected and required a bit more to address. There were issues that will definitely affect the stability of my knee going forward and the things I'll be able to comfortably do.  I have a follow-up appointment to discuss a lot of those points, but for now...it's quite a challenge.

I'm thankful for mobility and use of my limbs. Praying for a swift and speedy recovery.  Also believing for a plan that allows me to remain active and maintain the quality and fulfillment of activities I enjoy.

Freedom

These last few weeks have been so 'freeing' for Mireya  Being able to ditch the mask was major, getting her line removed was icing on the cake. She is living life in an entirely new way.  Enjoying every moment with freedom and without limitations.  She is transforming right before our eyes and it's a beautiful things to witness.

Mireya has asked to go outside every day.  She walked with me to the bus stop with Jalen for the first time since school started.  I've seen rolling down a grassy hill, but when it snowed, Mireya's excitement had her rolling over and over and over and over down the hills squealing with delight. (To view, click here Reya's Snow Fun) She never would have done that with the line in. She's been laughing more, smiling more, I catch her just grinning for no reason.  She told us she is so happy her line is out.  The girls took a bath 'full of water and bubbles', for the first time in two years. Those bubbles lasted forever, the excitement of sharing that moment together could have last all night, but after more than an hour, I made those shriveled toes exit the tub...stage left.  We take so much for granted. There truly are no words for the pure happiness of small things being rediscovered.

Thank you Lord for you grace.  Thank each of you for your prayers over these last two years, they have carried us through and these are the days we believed our hope and faith would bring us to.  We're so thankful.

We're so Excited

And just can't hide it......you 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, but....be 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.

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.....

Post 100 Days

Our appointment this week was very good.  We were really getting antsy about what Mireya's body has been doing since our last appointment.  We were happy to find her counts are holding relatively well.  We're continuing to wean her immunosuppression meds with little incident.  Her magnesium levels were low, but as we wean her off the tac, we've had to lower her dosage of oral and iv magnesium because her mag levels are increasing (as expected).  Mireya's been experiencing some issues with skin irritation around her line, but she's been really good about telling me when her dressing is shot, so I've been having to change it more frequently.  Due to a shortage of pentamadine, Reya will start taking an oral medication Bactrim to prevent a strain of pneumonia called PCP, which commonly affects immunosuppressed patients. 

Attending school was another point of discussion. Mireya will continue with Homebound instruction until the Spring.  Originally we talked about the possibility of her physically going to school in January or February.  After a lengthy conversation with her Medical Team, we all are on the same page and decided while it 'might' be okay for her to go back sooner, it's not worth risking her getting sick and her treatment being sidelined.  According to the Docs, this cold and flu season is showing itself early and not only out of control, but with resistance. 

I attended a Parent Forum through ASK about a week ago and learned about an awesome organization called Hopecam. Hopecam is working with Mireya's school to install software and a webcam in her class so she can be a part of the classroom experience.  It will be great for her to participate in lessons as well as see and interact with her classmates.  We're looking forward to being able to exist within the class through Hopecam!

We're back in clinic just after the New Year!  Having our appointments stretched out is a good thing, but it's hard for us to go these longer stretches because we don't know what Mireya's body is doing. Sounds a lot like doubt, which is the opposite of faith...it's not, just a reminder that during these 'stretches' earlier this year, Mireya's graft starting failing. God is a healer and we are totally relying on him and counting down the days to total and complete victory.   Continue to keep us lifted and pray over/for Mireya's body.  All things are working together for the good!   

Not Forgotten

It's so easy to slip off the scene when so much is going on in life...your life and the lives of everyone around you.  Sometimes you feel like your hovering just above the breaking point.  That thread is unraveling, the nerve is giving in, that last brown blade of grass in your yard has you wishing for the green you see in the yard across the fence.  Of course we know the grass is not always greener on the other side, because everything that looks good is not always good.  I've found it's okay to have these moments, the feelings and emotions are real, but we must choose not to hang out in that space, because defeat and depression dwell there. 

Every day we are moving closer to beating this.  There are low points.  There are times you acknowledge your tired, but you keep hanging on and pressing forward.  I recently saw a marquee that stated 'God gives his greatest battles to his strongest soldiers'.  'I' am weak and 'He' is strong.  Every bit of the strength I/We have is because of the Lord.  He knows exactly what we can take, bear and handle.

Times goes by so quickly, it's hard to imagine we've been on this path of our lives for over 19 months. We are still very much fighting and walking out the days and our reality until we reach total and complete wellness.  We have to keep our eye on the prize, because we know on the other side of this is joy and victory.  Israel Houghton and New Breed have a beautiful medley 'Not Forgotten/He Knows My Name' that is so fitting.  As I'm typing this, ironically I'm reminded that 'He Knows My Name' is a song Quentin lead in worship many times. The song says 'God knows my name, he knows my every thought, he sees each tear that falls and hears me when I call'.  The Lord will never leave or forsake us.  He has equipped us to walk this out despite it all.  Pray for and with us.  It's not easy, but it's worth it.

Keep my sweet girl in your prayers too

 Psalms 31:24 Be strong and take heart, all you who hope in the LORD. 

Round & Round

The world of counts, labs, cells and test is ever evolving. Mireya's counts have been good, her chimerism ratios are getting tricky, but we're still believing and trusting God.  It was noted in our last appointment that Mireya's skin 'appeared' to be dry and her lips seem to be in a revolving state of chapped and cracked.  I've seen cases of both chronic and acute GVHD and the natural instinct is to saturate the skin in every moisturizing and protective lotion and potion available, but the dryness and chapping associated with GVHD is not remedied by simply applying lotions or cremes. Fortunately, there's a low percentage of GVHD in sibling donor cases, but these occurrences have our Medical Team concerned about Graft vs. Host Disease.  We are continuing to confess the word over Mireya's body and against GVHD.  We know that dry skin and cracked/chapped lips are also common side affects of chemotherapy.  It's definitely something to keep an eye on and it remains on the top of our prayer list. We're thankful Mireya's counts are increasing and holding steady.  We choose to place our focus on the positive progress. Everything that concerns us, concerns God and he's working it out despite how it 'appears' or the 'implied' negative that rolls across the radar.   

Life & Monkeys

Our last appointment was a positive one.  The GCSF has helped to increase Mireya's counts.  Her magnesium still lingers, so we'll up the frequency of the IV Mag at home.  Mireya has also developed a slight on again off again cough.  We will need to restart the pentam in about 10 days to help fend off pneumonia.  Her tac level came down considerably and now is below normal.  This count is a mystery...26.6 to 6.9?  Mireya looks good, sounds good, and hasn't displayed any of the markers for GVHD (Graft vs. Host Disease). Thank you Lord!

Mireya will start Homebound soon.  Her kindergarten teacher has volunteered to be her Homebound teacher which is really exciting and a blessing.  We talked to the ASK team this week about Mireya, school and the " Monkey in My Chair' program.  I'd received information about the program from another clinic mom, whose sweet little girl also started Kindergarten this year.  'A Monkey In My Chair', was created to allow kids in treatment to remain included and connected to their class.  I was disappointed when registering to find the program was only extended to children with Cancer. Diagnosis aside, this is something that would be wonderful for any young child going through treatment that prevents them from attending school.  I really love the concept and had been thinking about how we could possibly incorporate something similar for Mireya while she is away from her class.  From the hearts and through the connectivity of some very thoughtful people, this sweet Monkey found his way to us (some rules and restrictions are meant to be bent just a little). We're all in this together, and definitely wish none of our kids had to deal with anything having to do with chemotherapy, transplants or with life threatening appended to it. I'm super happy she'll be able to take advantage of this program until she can physically join her class next year.

We're thankful for stabilizing counts and continuing to pray for an increase in Mireya's ANC, hemoglobin, platelet and white cell counts.  Everything is working together for our good.  We're standing on that word. Thank you Lord for continuing to do what only you can do....sustaining and preserving life.  Living (L) Intentionally (I) Fully (F) and Expectantly (E).

Throw Your Hands Up

I Will Watch Over and Protect Her

From the Beginning We've Been Side by Side

We're raising the roof AND praising God! Reya's counts were through the raised roof today.  The white count doubled.  Her platelets and hemoglobin also increased.  Controlled freedom is in sight.  Last night Mireya asked me if she could go home?  She's tired of being in the hospital, but also thinks some of these cool things in her hospital room will look great in her room at home.  Last year when Mireya started to speak 'out of her mouth' about going home, she was able to do so within days. We're hoping that will be the case this time too.

I found a throwback picture of Jalen and Mireya as little ones, in their camo gear looking like they are ready for battle.  Little did we know how telling this photo would be.  Fighting with and for one another through love....for life and continued togetherness.  God knows all things.  Thank you Lord for Jalen.  There are so many still awaiting donor matches.  You gave us perfection in an all eight marker match blessing.  We endured four losses before being blessed with this precious boy and two additional losses between him and Mireya.  The enemy was coming hard for the seed.  It's not going down without a fight, but guess what, the battle is not ours, it's the Lords.  We do our part and he does his.  Mireya's name means 'miracle' in Spanish.  God knew not only would we be walking it out, but she truly is our miracle.  Life and Victory will continue to follow.

Nothing is too difficult for God. Everything we stand in need of, he will provide.  Trusting is not always easy, but hold on to your faith and keep believing.  It's an emotional rollercoaster.  It very hard to watch your child endure a illness that threatens to claim their life.  I mean seriously it's hard to watch your child injure themselves where you weren't able to prevent it from happening, or fix it. Dealing with something you have no control over can make you feel helpless.  We're human beings, it is natural for us to respond to things through our emotions...but God! There comes a time in the midst of trials and adversity that you have to confess God is in control, and has the power and ability to work it out and see you through.  Worry, stress and anxiety will destroy your peace.  Is it always peaceful? No, things change from day to day, but I remind the Lord that I'm depending on him, I'm trusting him and I need him to help us through this.  The only thing I can stand on is his promises.

Deuteronomy 30:6 And the Lord thy God will circumcise thine heart, and the heart of thy seed, to love the Lord thy God with all thine heart, and with all thy soul, that thou mayest live. (KJV)

Hebrews 2:13 And again He says, My trust and assured reliance and confident hope shall be fixed in Him. And yet again, Here I am, I and the children whom God has given Me. (Amplified Bible)

Encourage Yourself

My heart rejoices in the promise of a bright and fulfilling future for my children and my family.  My heart leaps at the goodness and love extended toward to us.  Internal struggles and sadness are overwritten with hope and faith.  Very little prepares you for the ups, downs and the unknown in this funny little thing called life.  Continue to hold on and despite how it feels and looks, make a decision to stand on God's word and his promises. Thank you Lord for health, life, sacrifice, love, laughter, provision and victory...focusing on the finish line of this race.

The race is not given to the swift nor the strong but he who endures until the end. (parapharased Ecclesiastes 9:11) 

Do not let your hearts be troubled. Trust in God; trust also in me. John 14:1

Give Me Strength

Over the course of this year I've received many messages, posts and texts about the measure of strength we've exhibited throughout this journey.  Ironically I wake up most days asking the Lord for strength because I don't 'feel' strong.  I have 'hope', and my faith tells me that God is going to see us through this.  It is not of my own will. Some days my will tells me to stay in bed, my will doesn't want to talk, my will struggles with how we are back at this place, but the will of God shows me despite how things appear or feel, we have healing and victory in him.

There are times I'm on edge and could crawl in a corner and cry as the hours go by.  My patience is worn thin and I'm angry because I look at a five year old little girl who's battling a diagnosis that wants to hold on for dear life and destroy hers. I look at how the life of everyone has been largely consumed or affected by rolling with the flow of isolation, hospital appointments and illness.  A lot of the time it doesn't feel like strength, it feels like barely holding on, but in the midst you find there is a greater strength inside to manage and cope.  You do what you have to do and more as needed.  I have a beautiful Warrior Princess that is fighting with grace. I have a valiant little guy who despite his fears will endure for his sister.  We are Mireya's advocates, overseers and caregivers. Yes we're Mommy and Daddy too (and advocate, overseer and caregiver fall under that umbrella), but there are a lot of twists and turns in managing and maximizing the medical care of someone you love.  For over 15 years, I watched my mother as this person in caring for my father, not realizing the fullness of the responsibility, nor the enormous toll it takes.

We've not really been good at asking anyone to do much for us.  It's not pride or beyond our place, we've just always handled what needs to be done by ourselves.  We're so grateful for the outpouring of love and support we've received from so many.  At times it has truly been emotionally overwhelming. I have said it several times throughout this year, I feel that every good thing I've ever done in my life is coming back to me.  It has always been my desire in life to serve, love and be a blessing to others. I believe God is showing his love for us through the hearts and love of people.

Over this last year, I've learned to be present and savor the moments I have with my husband and children.  I don't sweat the small stuff, because dealing with something of this magnitude will quickly help you put things in perspective. I take nothing for granted and when the weight of the situation feels like to much to bear, I fall on my knees and pray.  Prayer changes things. I don't know where I would be without Christ in my life. I don't know how people go through such life altering events without faith.  I truly would have lost my mind by now.  One of the hardest things is watching your child enduring it all and feeling like there is nothing you can do.  I look at my sweet girl and I would trade places with her in a heartbeat.  I continually ask for prayer because there's power in prayer and we are standing on the prayers, thoughts and love of so many.  I find my strength in knowing the day will come where I look back on this year of our lives and thank God for victory and healing for Mireya.

Many days my heart is heavy not only for my child, but for the children of the many families I've come to know and love.  God wired me that way.  It's hard for me to separate myself from the emotion I know is attached with each situation.  Continue to pray for our strength, but know there is nothing super special about #TeamBolton...if you were in the same situation, you would do all that is within your might to hold your head up and face the situation gaining knowledge, strength and power along the way.  There are dark moments, but we can't dwell in that space. It serves no great purpose. Don't get me wrong, there are many nights I've cried and it was so necessary and cleansing for my soul, I know our total happiness and joy will be returned to us.  I know God has something so incredibly great for Mireya and for us.  I also believe that in the midst of all this, he has been pleased that he could trust us to walk this out, as we've held on to his unchanging hand, with faith.  Everything within me knows this will turn out better than alright.  Our faith has increased and our spiritual muscles are growing.

Some days I laugh to keep from crying.  I try to take the higher road and recognize any measure of goodness I can find.  I've always been that type of person, choosing to see and find the good in most any situation.  This last year has allowed me to 'see' things from a grander perspective.  I have a greater appreciation for everthing and everyone in my life.  I do not understand everything, but I don't have to, God knows.  None of this took him by surprise, his word says he will complete this work and until that time, we just count it 'mostly' joy...yes I deviate from the 'all' because it's not 'all' joy, but we find joy in knowing who we serve and his desire for our lives and our family's life.  Never leaving us, never forsaking us and our faith is increased and many around us have made a choice to see and look at things differently.  I don't know any other way to be, but prayerful, hopeful and thankful.  In him I live, move and have my being.  My happiness and satisfaction is not tied up in Aplastic Anemia and all that it has brought into our lives since last year.  My happiness come from waking up everyday alive to face another day not knowing what the day will bring, but knowing whatever it is God is able and he gives me the strength and capacity to face it.

Thank you for your prayers, your messages and encouragement.  It lifts us up.  When we're feeling low, we look around and know it could be worse and we thank God for the 'better' days that are to come.  The battle is not yours, its the Lords and he's got it.  Don't give up, don't give in, because in the end, we win.  Love conquers all and the greatest love and sacrifice of all is God's love for us.  He knows our hearts, our hurts and how much we can bear.  He bore it all and desires for us to have total victory.  We're keeping our eye on the prize and trusting that it won't be long before we taking that victory lap.

The Heart of The Children

So much has transpired in the last few months.  The love and support of many is still so amazing.  Over this 11 month period, Mireya has been an exemplary patient and a true fighter.  She presses through with a resilience and a flow that is beyond words.  We try not to place a lot of emphasis or focus on her illness.  We do what needs to be done, have our checks and balances and keep it moving.  God is working it out and we're pressing toward the mark of victory over this diagnosis.

Mireya was 3 years old when this all began, about 4 weeks before her 4th birthday, and a brand new 4 when she was diagnosed.  She has been a trooper.  There is a lot about this journey she does not have 'words' for which has presented itself at times as what I'll describe as melt downs.  Something very different from a tantrum.  It's apparent in those moments, she is overwhelmed with her emotions.  For all she has gone through, I think she is entitled to a few breakdowns.   I've certainly had my share throughout this ordeal.  Please pray for Mireya's emotional well being and the ability to continue to do all that is asked of her as we work our way to better.

As Mireya gets older she is more 'aware' of things and has been more vocal about things upsetting to her. We had not realized how sensitive she's gotten about her hair until a recent melt down involving her sister. I took Makinley's hair down as I prepared to wash it.  Mireya's hair is growing back beautifully, but when you have a three-year old sister with hair down her back sashaying around you just might have a moment.  Anyone remember those 'You Just Might Be' books, a lot of those points were hilarious.  This not so much. It struck Mireya like a freight train.  She started crying and sobbing that she wanted her hair back.  She wanted long hair.  It broke my heart.  She asked me why I had her hair cut.  I sucked back the tears and explained to her that one of the medications she took last year made her hair start to come out and we made a decision to cut it so we didn't have to watch it fall out. That was a hard day, but I'm glad we did it that way.

We've never made a big deal of Mireya's hair.  She's gotten into wearing hats, which I could never get her to do before.  We've tried a few neat things with her hair as it grows, which she's liked.  We have cool hair accessories, but deep down in her heart, she misses and wants her hair.  That is a very real emotion.  It's just not one she has voiced until now.  I tried the whole your hair is still longer than Mommy's (enter the Family Feud strike gong) that does not work anymore, because Mommy just keeps cutting hers every month or so.  It hurt to hear and see. We are believing Reya will attend school this Fall.  It's definitely different going from a program with other kids in treatment that look like you to the big wide world of public school.  Keep this in your prayers. We hope highlighting individuality and her uniqueness will reinforce how she feels about herself as opposed to focusing on hair.

Summer has always been a time for us to to enjoy water activities.  It's something we've obviously had to curtail due to Mireya's Hickman Catheter.  Mireya asked me last night if she could have a pool party when she got her line removed.  Again my heart sank at the innocence of the question and the huge milestone she realizes it is.  I told her she would 'absolutely' have a pool party when her line is taken out. The first of many parties and celebrations.  So we definitely have that to look forward to.

My Super Hero boy/brother Jalen has also been walking around with a heavy heart.  When his sister went into the hospital, he was worried if she didn't get better that he was going to have to 'do something' again.  Jalen and I talked at a base level about his having to 'do something' and he began to get physically uneasy just speaking about the possibility of being his sister's donor again. Since then, we've broached the subject with Jalen very gingerly. There is no need to discuss something that is merely a 'maybe', but also Jalen is the kind of child who would be consumed by reliving in his words what was 'a good thing for his sister and her life, but he didn't have a choice about doing it".  Jalen did great during the transplant process, but how a child processes events varies and obviously can be a frightening place.  A transplant via the boost would require more this time and it is likely we will only share with Jalen what we deem necessary when we have to.  I don't want him internalizing what appears to be a concern for him through his own deducution of information.  Bless his heart.  

The one thing Jalen has wanted or asked for over the last year is an Ipod Touch or an Ipad.  I was surprised to see that several of his classmates had an Ipod Touch.  He has asked a billion times about the possibility of him getting an Ipod Touch or an Ipad.  I told him maybe he could get one for Christmas, but that it was a really big gift for little boy, but just maybe.  I still happily live in the world of the Blackberry, but after investigating the Ipod Touch as opposed to the Ipad, I'm inclined to go a few hundred more for the Ipad.  It just seems to make more sense because it would be a gift that they all could use.  I am making a confession....IF Jalen has to go through being a donor a second time, I'm going to do all I can to have an Ipad in his possession as he recuperates.  The gift he is giving his sister is priceless and I will do what I can to make that happen.  I'm proud of him.  Even in his fear, he knows what he is doing is helping his sisiter's life and even if he feels he doesn't have a choice he knows it's a very good thing.  So if your in the know or have a connect, that is definitely my hearts desire for him should we have to repeat this process.

I've spent a few nights mulling over these conversations and instances with both Jalen and Reya, all of it filling my eyes with tears and my heart with sadness, but I will delight in the day that Reya's hair has grown out and she can take a bath with more than a few inches of water or she can jump in a pool.  Well I'll be delighted, but with a different appreciation for doing two little curly heads.  I will relish the moments where she is free of all issues and Jalen can relax without rotating a thought in the back of his mind about being a donor for his sister.  If he happens to be downloading an app on his new Ipad, more power to you big brother, you more than deserve it!

Holding Pattern

Mireya's visit this week showed a small improvement in one area and a steep decline in another.  It's hard to gauge progress while fighting this infection.  We're in a holding pattern for another week to see how Reya's body recovers.  Our spirits are lifted as we focus on the expected end of our sweet, courageous fighter 100% healthy.  God is well able to do it. The weeks seem to take forever, but we know everything can turn around in an instant and that is what we're trusting God to do.

We love and thank you for your continued thoughts and prayers.  

A Day of Support for CMN

The Bolton Family was contacted to participate as 'Celebrity Baggers' at a local Walmart to support the Children's Miracle Network.  Many of you remember we participated in the Radio-Thon for Children's Hospital of Richmond last year.  This year Walmart has partnered with Children's Miracle Network and a challenge was issued to area stores to add some fun to their efforts of raising money. The store that raised the most money over the last week, would have 'Celebrity Baggers' come in to allow the community to 'see' the difference they are making in the lives of who they consider their celebrities...the children and families receiving care at Children's Hosptial of Richmond (CHOR).

The Brook Road Walmart was named the winner of the challenge.  Ms. Virginia was also invited to participate in the event.  Unfortunately, there was a conflict with another previously scheduled appearance, but have no fear, the Ms. Chesterfield Princess program was in full effect. It doesn't hurt that Mireya is a patient and a Princess...have crown, will travel.  Thank you to Linda Thomas (Director, Ms. Chesterfield Princess Program) and her son, Corbin Thomas for coming out and being celebrities with us for our fifteen minutes of love and fame.  Ms. Chesterfield is a part of the Ms.Virginia/Ms. America organization and we made sure they were well represented by our program. The Children's Miracle Network is the charity of choice for the Ms. America organization, so it was a perfect pairing.

We had an awesome time serving cake, bagging groceries and thanking customers and employees for all their work and contributions.  I believe it's very meaningful to see how your donations are making a difference in the lives of others. We also had the opportunity to meet another local family of celebs.  People were touched by our presence and literally started handing us donations.  It was amazing.  One young lady inquired about which of my children was in treatment? I shared Jalen and Mireya's story and how CHOR has been such a blessing to us over this last year. Minutes later she came back to ask if we were taking donations and told me she was going to find some money to give. When she came back and handed me her donation, we embraced and she began to sing.  People around us stood in their tracks as she poured words of encouragement, blessing, and victory over Mireya and our family.  I will never forget this encounter.  Thinking about it brings tears back to my eyes, it is one of the most beautiful things I've experienced during this journey. The Lord sent a beautiful, sweet, angelic voice to profess his goodness for everyone to witness. She told me as she listened to me talking about Mireya & Jalen and how the Lord had been moving in our lives, she was moved and it stirred something up in her.  WOW...clean up on Aisle 29, someone please pass the tissues.  It took a minute before I could really get myself together.  That was such a God moment.  It blessed me beyond words.  I don't know her name, I may never see her again, but I thank her for the boldness she had to come forth and be a blessing to me.  I thank God for that outward sign of encouragement and love.

The children enjoyed sticker and candy duty, especially Ms. Sweet Tooth Makinley.  I can assure you for every Lifesaver she handed out, she ate one (the old one for you, two for me trick). The hour went by so fast. I could have stayed for another hour or maybe longer, well at least until the stickers and candy ran out.  The time we spent among those who gave large and small was wonderful.  Walmart has raised over 30 million dollars in one month for the Childrens Miracle Network. Our local area stores have raised close to $200,000 within that same time frame.  In addition to Walmart, Sam's Club, Food Lion and Rite Aid also have campaigns starting in the area.  If you frequent any of these stores consider a donation while checking out to make a difference in the life of a child and his or her family.  God Bless you all and 'Thank You' to the Children's Miracle Network and our local Children's Hospital.

Holding On with Faith

This past week was rough.  Reya's platelets were shot and she had to get her first platelet transfusion since July of last year.  Based on the amount of bruising she has had, I thought she might need them. The optimism her medical team had is waning.  Having her counts so low was really a blow to recent suggestions that her body was making a turn around, but we've remained prayerful and hopeful.

One thing we discussed with the Medical team was Mireya's Tacrilimus medication.  The prescription we received just prior to our trip seemed to be a very concentrated formulation.  It was apparent because of the sediment at the bottom of the bottle and it took a lot for us to keep it mixed.  It was a pain, but we noticed that her counts for that two week period were at the highest they had ever been all the way across the board.  When we returned, we had to get a new prescription of the Tac and her levels over the last few weeks have not been good.  In our minds, the only difference has been the medication.  So I called Westbury Pharmacy to 'share' our theory. Long story short, there are two ways to make the medication.   It is either compounded with tacrilimus powder or the actual tacrilimus capsules.  Based on my description the Pharmacist believes the bottle we had in Florida was mixed with capsules, which is not the preferred way to compound it because it requires a lot more work and steps to make. After checking the computer it was confirmed the medication we had while away was made with capsules, and every other time it's been made with the powder.  Imagine that, God is still revealing possible answers and solutions to that which cannot be figured out by the Specialists and Physicians.  So I asked them to humor me and make a bottle with capsules for Mireya, because we only have about 10 days to see a change in her counts or we would be facing another Bone Marrow Transplant.  The Pharmacist 'sounded' skeptical, but wanted to do whatever would make us happy.  She said 'We're the Pharmacist and our preference is to make it with powder, but Momma knows best'.  I'm having visions of Mother Gothel singing her jingle on Tangled.

We immediately started taking the new Tac anxiously awaiting our upcoming appointment to see if there would be any improvement.  We arrived in clinic and it was a matter of fact meeting of the minds.  I thought we had about 4-5 more good days, but yesterday was D-Day. Reya's counts would determine if a second transplant was necessary via this boost.  We talked about the Bolton theory of medicine.  The Head of Hemoc took a few minutes to politely listen and consider the probability of the 'mixture' being an issue, but she doubted it was a factor.  We're all on the same page.  No more time can be wasted. We cannot allow Mireya to dwell in this space any longer.  This 'boost' which up until this point has been a very casually discussed process was explained full spectrum and is 'on deck' as our next option.  It will entail a lot more than I understood initially.

Jalen's cells would be accessed through his blood as opposed to the bone marrow which will require him to have a port or a pic line inserted for the duration of time his blood is accessed (approximately 2 hours or more). It would be surgically inserted that morning and possibly removed the same day if all goes as planned.  Otherwise it will be left until it is deemed the boost was a success. I was of the impression Mireya would not have to undergo chemo, but this procedure will require some dosing of chemotherapy.  We will need to be on the Bone Marrow Unit for about 7-10 days.  This is a lot better than several weeks, but again my original expectation was very different than this newly painted picture.  You cross each bridge as you need to...perhaps in my mind and heart I wanted it to be a simpler process with less of an impact all the way around.  We're fighting for my girls life and we'll do and go through all that is necessary for that to happen.

The first count to come back was Mireya's platelets and they were up. Immediately there was bewilderment at how her platelets had increased, especially since she received a transfusion last week.  Platelets only last for about 7 days.  We were past that time frame, which means her body is making them and they have increased in one week's time by eight thousand.  About fifteen minutes later her other counts showed up.  There was a small drop in her red cell count, but other than that, all the other counts are up.  The TAC level almost doubled.  All I can say is God will work it out.  Don't ever count yourself out, even when it 'feels' like your hanging from the last rung of the ladder and your feet are dangling in the wind.  Trust your instinct, intuition or what we know as the soft, nudging, persistent voice of the Holy Spirit to draw our attention to the answer or what was not obvious.  The Department Head came to me before we left to tell me that we really have given her a new way to look at things and that given a similar situation she would definitely look at 'how' the medication is compounded because it could be a determining factor for another patient.  Thank you Lord.  Even in the midst of our situation, being armed with what seems to be a small thing could be so helpful to someone else.

Thank you for another victory!  Thank you for another week!  We trust and believe that Mireya's body will continue to create and increase in counts. We're looking forward to next week's visit and expecting another praise report.  Continue to pray for our family and for our sweet Warrior Princess.  We're still standing on the word of God.

God is Sovereign and is faithful to complete every good work he has started. Philippians 1:6