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!

Tuesday, August 23, 2011

Day 43

Mireya had a great appointment today. She did her Nurse Betty bit (took her own blood, prepared her labs and flushed her lines) but then tried to do a disappearing act when it came time to change her dressing. We managed to get through that without incident. Mireya continues to have favorable progress. All of her counts have increased. Her plates are almost 270k. Thank you Jesus. Her white and red counts are up and her magnesium level is showing a slight improvement. I believe as Mireya continues to take the magnesium via her line and orally we will see that number increase. We saw Allison in clinic today and her counts are fluctuating quite a bit, so please keep her in your prayers. We are believing for an increase in her white cell count. Mireya's medical team is very pleased with where she is and as a result we will only need to be seen in the clinic once a week going forward. I'm so excited. 57 more days until we hit the 100 Day Mark. We are trusting to reach this milestone with no issues or incidents.

Thank you so much for your continued prayers. God is so good and we're so grateful that Mireya is continuing to do so well.

Psalms 100 (KJV)
Make a joyful noise unto the LORD, all ye lands. 2Serve the LORD with gladness: come before his presence with singing. 3Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. 4Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. 5For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.

Monday, August 22, 2011

A Little Roadtrip Fun

We took the show on the road and drove the kids out to the Goochland Drive-In Theater. Mireya was excited about seeing 'Cars 2' when it came out but was admitted to the hospital that week. The Drive-In had previously run 'Cars 2' for a few weekends with sold out crowds. Several of us have been lobbying to have it rerun and they decided last week to do a 'Spy Kids 4' and 'Cars 2' feature, with a special 'reverse' showing last night.

They have two features every weekend with the more kid friendly showing first and after a brief intermission, the second movie is shown. We typically leave after the first showing, but have stayed on occasion to watch the second movie. It makes for a very late night. The movie begins at sunset, so the second movie normally isn't showing until 10pm or later. By the time the second movie is queued up the kids are either sleep or ready to fall out.

We were super excited that they showed 'Car 2' first and then 'Spy Kids 4' last night for those of us that had not previously seen it. They open at 6:00 so you can have time to eat and there is a playground area for kids. Kids 3 and younger are free. So it's relatively inexpensive and on occasion they have Pet Nights and Carload Specials. Everything at the Snack Bar is $3.50 or less. They serve their infamous 'Gooch Dog' which neither of us has mustered up the nerve to try although they rave about it. Quentin was close to trying it last night...maybe next time.

This weekend is their 2nd Anniversary and they will be showing 'Smurfs' and 'Spy Kids 4'. I anticipate a lot of people being there for that lineup. We'll probably still go or maybe wait until the mid-week showing. We love that Reya can have this as an option of events, but overall we still want to avoid super crowds. There was definitely a lighter crowd than normal last night which worked out great for us. The kids love it. Of course they couldn't play in the playground area, but they understood why and chose instead to climb in the car, out of the car, on the chairs, on the blanket, in rotation and succession. Going to the drive-in is something I remember and enjoyed doing with my parents when I was younger. I'm happy that the Heidels are living their dream and have given us the opportunity to enjoy this with our family.

Friday, August 19, 2011

Zone D

A few weeks ago my Mom came up with a great, inexpensive way we could allow Reya to be outdoors a bit more without the ill effects of direct sunlight and heat. One thing about us is when we have an idea, it's on until the mission is accomplished. When I was in Jr. High School (shout out to all my Curundu peeps) our buildings were alphabetical A, B, C, D, F and our Cafetorium. Well the Bolton's now have what I'll dub 'Zone D'. A deluxe screened Gazebo that has become our place to hang out during the day and most nights without getting eaten up by mosquitoes or burning down the deck with a bazillion citronella candles trying to avoid getting eaten up by mosquitoes.

It has been awesome. The first day we put it up Reya played outside for a few hours (have doll house will travel outdoors). We've been really enjoying it. Our original plans to watch Rio under the stars were sidelined due to rain, so last night we had our re-premiere of Rio in our 'outside house' as Makinley calls it. It was fun. I fell asleep amongst the bean bags and children piled all over and around me. Today we did art out there. The kids had a blast. Just to be outside, feeling the warmth (but not full on heat) is so nice. It's also a 'controlled' area of play for Jalen. If it were up to him he'd be like most of us were as kids outside playing all day here, there and everywhere. Unfortunately we live in a much different world today. He enjoys that he's outside and I enjoy that I know exactly where he is and he's not feeling so holed up. It's time for another 'Track Night'. I think everyone is having a little four-wall a phobia or itis, so a change of scenery in the next few nights will be good.

The other thing I love about this gazebo is that we can roll it up and put it back in its bag. As a kid I went camping most every summer and I've been itching to go as a family for a few years. The main concern I have is there is so much I'm not comfortable with. When I went camping as a kid there were adults 'responsible' for me and the excursion, if we go as a family then I'm responsible for it all (yikes). My friend Erin and her family camp a lot and she has been encouraging me. I'm sure we'll eventually try it (remember at some point the missions always get accomplished), so surely this gazebo is something good to have in our arsenal. Maybe for the Bolton's Great Outdoors Adventure (sans the Chevy Chase or John Candy visual)?

Tuesday, August 16, 2011

Lights, Camera and Love in Action

#TeamBolton has been featured in Mexico Restuarant commericals, Real Simple Magazine and selected for the launch of 'Momtourage' by iVillage. None of those features compare or have the heart and compassion behind the NBC Channel -12 On Your Side 'Act of Kindness' segment.

I shared last week how our friend, Frazelle Hampton nominated us for this reward. We had no idea what the completed piece would entail, but we tuned in at 5pm and watched everything from new laws on concussions, house fire disputes and the plague of ragweed that is affecting so many people right now. At the end of the 'First News' segment we watched our blessing unfold. We are so humbled by the outpouring of love, support and prayers by so many. People we know, many we don't know, but God knows and he has heard our prayers and is working this out on our behalf. Mireya's health is increasing everyday. We've seen more life and spirit in her than we have for months. That in itself is a blessing beyond words. It's incredible to see illness fading and life reemerging. Life is so precious. It's so easy to say those words, but to live them adds depth and a meaning that is indescribable.

Thank you to our families, our friends, our church family, friends of friends who have reached out to be a blessing, who have prayed and stood in this gap for us as we've gone through one of the toughest things we had to endure. In every obstacle, challenge and circumstance God has shown himself mighty and true to his word. Has it been a struggle at times? Absolutely, but he's given us a peace and a hope to keep pressing. I've said this many times before God continues to show us how much he loves us through the love, support and generosity of others. We stand in awe of his goodness and say 'thank you'. No longer feeling undeserving, but knowing that God can do all things and that he will use people to fulfill what needs to be done. We've had to learn to be better 'receivers'. We're humbled and grateful for it all.

If your not in the Central Virginia area, I've included a link to this incredible instance where love, support and community met last week. It was a wonderful surprise and we thank 'Michael & Son Services' for partnering with NBC 12 and their sponsorship of such a wonderful program. Thank you to Sabrina Squire and Matt Boyce (the Producer), you captured and presented this piece beautifully. Family battles major illness & other challenges - NBC12 News, Weather Sports, Traffic, and Programming Guide for Richmond, VA |

A #TeamBolton Facebook page has also been created. 'Like' the page and join the community to remain connected via FB. The donation page has also been a true blessing to us. Thank you to our friends for maintaining this site on our behalf and to those that have been positioned to be a blessing to us through this site. www.gofundme.com/mireyas-miracle.

Love and blessings to you all.

Monday, August 15, 2011

Three & 1

This translates to Mommy and three little ones at an appointment today and everything went GREAT! Mireya's counts are increasing. We still have a couple of areas that are holding their ground, but lower than expected. We continue to work through the dosing of her meds hoping to strike the right balance to see all of her numbers in a favorable range. A few of the medications require compounding which all pharmacies are not equipped to do. At least not for quite a few of hers. Westbury Pharmacy is great,but a bit of a hike. They are open every night until 11pm and deliver for a nominal fee of $3. It doesn't hurt that they have a 'Cookout' just across the way. That banana pudding milkshake is enough to make you want to drive over there as often as necessary. So the way I see it is that $3 delivery is saving me a couple of dollars and lbs.

Mireya has developed a bit of an annoying cough and a runny nose. We're watching her closely and believing we'll have no fever associated with this. Reya was her usual super helpful self. Helping to draw her labs and flushing her lines. She let us all know that 'flushing her lines makes her excited'. I just don't know what to make of this fascination with flushing her lines. Perhaps we have a future Dr. on our hands. Today was our quickest appointment to date. God answers prayers because this was not the day for a long appointment with three kids. The children were at the threshold of getting antsy and suddenly we were released. We didn't even get through the entire Barbie "The Nutcracker" today. Thank you Lord for orchestrating the flow and structure of this one so perfectly.

Ms. Claire stopped by to see us and she brought Mireya some really cool sparkly stickers. By the time we reached the elevator those stickers had been pretty evenly disbursed to each sibling. Continue to keep us in your prayers especially this week as we battle through this cough and other symptoms. God is faithful and continues to carry us through. Moments of weight and heaviness come, but he always shows us a bright spot and that is what we hold onto.

1 Peter 5:7 Give all your worries and cares to God, for he cares about you.

Sunday, August 14, 2011

Acts of Kindness Snippet

I've not seen this actual piece on tv yet, but a few people mentioned they saw a commercial or snippet of the upcoming 'Acts of Kindness' segment. A dear friend through technology and good ole' DVR was able to share this with us and I in turn want to share it with you.

AOK Clip

The day of the taping is still a bit of a blur so I can't wait to see how the team pulled it together. Mireya looks just as beautiful as a little smooth headed girl as she does with all that hair. She and Jalen were sitting together the other day and he said 'your hair is tickling me' It has started very faintly to come in and for now...it's blond.

Be sure to tune in on Tuesday at 5pm to see what a blessing this was for us.

Friday, August 12, 2011

I Survived

It's been a long day and I'm walking around in a blur. Paris is officially moved and settled in at LC. This is such an awesome time for her. I'm so happy and proud. I almost made it out of there without an emotional meltdown, but a funny thing happened at the curb as I was about to get in the car. I have given her lots of hugs and felt pretty secure that any tears that wanted to join the sendoff would at least wait until we got around the corner and out of sight. It just didn't go that way, but it's all good.

Paris' roommate is a lovely girl. We had the chance to meet and talk with her family as we worked to get them moved in. Paris will be great and I will be fine. It definitely felt odd not to have her walk in from work or hear her in her room. Jalen has called dibs on her room. Does it really start this young? I tried to explain to him that she will be back, but he said he just wants to have it for a few days and then he'll move back to his room. Then Mireya started throwing her pitch about wanting it to be her room. Well let me throw my pitch in, I want another house. So now that we've staked our claim and gave our closing arguments, let's all go to our respective places in this house and shut it down.

The Transition team has them pretty busy all week, but we'll look forward to skype or ovoo, text messages, brief phone calls and the art and fun of sending our first care package....to Paris with love.

Thursday, August 11, 2011

Taking It to the Streets

Yes I know the Doobie Brothers during the Michael McDonald years. The Boltons had to move the evening par-tay off the premises and on-location. The kids have been super amped, borderline bouncing off the walls so we had to go for 'Operation Defuse the Energy'. We grabbed the mask, put on the kicks and went out to the track. The girls donned their princess gowns and around and around we went sans the disco ball or the impending arrival of a prince. Who needs a prince when you've got Daddy!

I don't know how many laps we did in total, but we were out there for quite a while. We ran, we walked, and a few times we walked and ran. Jalen ran an entire lap and a half without stopping in Crocs. A lady was running her laps and asked if he could keep up with her. The next thing I heard is 'your so fast'...she couldn't keep up with him. He looked like a cross between the Energizer Bunny and the Road Runner. I had to cut across the track because he just wouldn't stop running. The girls were getting it in too. Those princess dresses were flying in the wind and their tennis shoes lighting up with each footstep. Jalen did take a pause so he could roll down a hill. I really wanted to join him, but I passed on that good ole' fashioned fun. Remember how fun that used to be?!

It was nice to be out in the open, at the appropriate hour with only about 5 other people running, jogging and walking around too. We did a cool down lap and Jalen practically collapsed on the bleachers. He was so tired I gave him a piggy back ride to the car, which meant Daddy had to lock and load the biceps (guns) to carry both girls to the car. When we got home all the kids were exhausted. Jalen said he was so tired he needed to go right upstairs and go to bed. Hmm..we may have to have Track Nights more often.

Being out on the track was great for me too. I admit that these last few months have taken a toll on the system and there's no excuse, but my excuse is that I'm eating well (you guys have been making sure of it) and I've been pretty sedentary. It's not a good look, but not the first time stress, emotions and food found respite together. However, it's not the look I'm going for. So I'm going to need to make some changes. I have so much before me and I want to be in better physical shape to enjoy it all. My body is a temple and I need to discipline it and keep in under control. Lord help me.

Wednesday, August 10, 2011

Lord Help Me

Moping and sadness have been circulating in the air. I can't believe Paris is going away to college in 1 day. Lord help me. I've asked for his help on this one over and over again and I continue to find myself wrecked emotionally. I'm so happy for Paris, but I'm so sad for us. She will be missed terribly. Her spirit of love, laughter and lighthearted goodness will be gone. Lord help me. The kids have been counting down the days. Jalen has exclaimed he will be going to his friend's house. In other words I just don't want to be here when this all goes down. Reya had her moment of 'the time is cutting me close' the other night and burst into tears. Makinely in her own way has just been hanging under Paris and asking to go in her room a bazillion times this week. Lord help us.

It doesn't help that you have so many other things tying up and pulling at your emotions. It's like most anything could take you to the bridge and your a sobbing crying mess. Paris is very much like me, she's very sensitive to people and things. We've gone from glassy eyes to tears streaming down our face in the realization of how much we are going to miss one another. I've been out of sorts all day. Paris asked 'what's wrong'. I said 'nothing', but she quickly chimed in 'oh i know you realize how much your going to miss me'...uh yes that is exactly what it is. Instead of bursting into tears, I went outside and quieting wept. Lord help me. I imagine the ride Friday being really exciting because we are all anticipating moving in and kicking off this new chapter and experience, however, it's the ride home I'm dreading. Actually leaving and knowing she's staying and we're going home without her. That will truly be a bittersweet moment. I know at some point it will get easier. Lord help me and heaven help us!

Psalms 46:1 God is our refuge and strength, a very present help in trouble.

Tuesday, August 9, 2011

Surprise, Surprise, Surprise

Today I felt better than Gomer Pyle ever did. My husband and I had a meeting this afternoon at our church with someone who wanted to be a blessing to us. For the life of me, I couldn't figure out who or what it would be. I had fixed in my mind that perhaps it was a representative from Costen Floors. Costen Floors was partnering with our church to be a blessing in facilitating getting our floors redone to provide a safer and more feasible environment for Mireya. Those plans have been sidelined for now, due to the potential risk to her health, but in my mind I thought perhaps it was in some way connected to them.

Imagine our surprise as we entered the sanctuary for our meeting and a group of people shouted 'Surprise'. I didn't know what to think. I started to pan the room and saw a unfamiliar face with a camera and as I continued to the right I saw a very familiar face, Ms. Sabrina Squire. I heard 'You've been selected as this week's Act of Kindness recipient'. I have no idea what my face looked like as this is all unfolding, but I was seriously in a state of shock. Our friend, Frazelle Hampton nominated us for this reward. The premise for the 'Act of Kindness' segment is what we've talked about all throughout this journey...being a blessing to someone. Frazelle was given $300 to Pay It Forward to help someone or an organization in need and she chose #TeamBolton. I will admit that once Frazelle started talking it sounded like the teacher on Charlie Brown, 'Venus and Quentin...whomp a whomp a whomp whomp'. I was fading in the moment and overcome with emotion. Everyone knows I'm very easily moved to tears and today was no exception. We were so touched and so honored. There was something about that camera zooming in that caused me to fight within myself to rise above the emotions, because I could have stood there and bawled my eyes out. I had a Oprah moment and thought it would not be cute to have the 'ugly cry' on tv, at least not the full on version. So we'll all prepare for possibly an abbreviated glimpse of what shock, amazement, surprise and gratitude looks like all rolled in one.

My heart was so full. I couldn't stop smiling at the goodness and favor of God. Sabrina and Matt (the Producer) were awesome. I thought it was really cool that they'd spent some time reading the blog to become acquainted with our journey. I think it lended itself to really being able to identify with how special today was for us. We love our family, our church family, and our friends for your continued love, support and prayers. At Faith and Family Church we love on purpose. We understand the importance of standing in the gap when and where there is a need. We know how vital it is not only to be an anchor for one another, but if we need to jump in the boat and row, we realize that 'together' we can accomplish the task at hand and get there faster. What a blessing!!! God answers prayers.

Details are lacking because I really don't know what the final spot will look like, but we had a great time laughing, crying and sharing. I loved watching Sabrina's journalistic flavor skip through the piece and her ability to make us all feel the heart behind this awesome initiative of community and Paying It Forward. I cannot wait to see the segment air next week. Please tune in Tuesday, August 16th at 5:00pm to NBC's Channel 12 - On Your Side and 'Acts of Kindness'.

Romans 12:13 Share with the Lord's people who are in need. Practice hospitality (NIV)

Monday, August 8, 2011

Keep Rising to the Top

We had a great appointment today. We only watched' Barbie's The Nutcracker' one time but quickly moved to 'Barbie and The Pegasus', another new favorite. All of Mireya's counts have increased. Praise God!!!! We've modified a few of her medications and she has been placed on another that eliminates bacteria that causes a variety of infections, the main concern pneumonia.

Mireya has become quite the helper during her appointments. She loves helping the nurses collect her labs from her line and her biggest thrill is 'flushing' her lines. This addiction started on the Bone Marrow Unit. Her tag line became 'I need to flush something' and it wasn't the toilet. She has become so in tune to caring for her line, which medications she's taking and wearing her mask has become second nature. The one thing she can not stand is having her dressing changed. If you mention that it might have to be changed in the 'next year' she gets hysterical. The dressing has to be changed every seven days and apparently dressing changes are dreaded by the majority of the kids with lines. The process requires everyone in the room to be masked and I'm usually lightly restraining Reya's hands and calmly talk her through each step. The Nurses are great at getting through this relatively quickly with many attempts of divert and distract.

Allie was in clinic today. She is doing well and preparing for Camp Fantastic next week. Sweet little Emily had been having a rough few days on the Bone Marrow Unit, but we heard that she may have been able to go home today which is great news. Ms. Claire also came by to visit with us today complete with her blue 'Precautionary Contact' gown (more on that later). Claire conducts a 'Coffee and Conversation' session each week for families of all pediatric in patient families. I had the joy of hanging out with her for a few sessions during our time in the hosptial and on the Bone Marrow Unit. Claire made a point of visiting with us every week and has caught up with us over the past few weeks in clinic too. Reya enjoys seeing Claire. We're going to have to coordinate a visit up to the Bone Marrow Unit because Mireya really wants to see her favorite nurse Ms. Leslie. She has asked about her a few times a week since we've been home. Ms. Leslie was off over the weekend Mireya was discharged, but her last words to Mireya was that she would see her the following week and she has not forgotten that. We're so excited that Reya's counts are rising and we're believing for continued increase. God is faithful and we're still trusting him in and through it all.

2 Chronicles 16:9 'For the eyes of the Lord run to and fro throughout the whole earth to show himself strong on behalf of those whose heart is loyal to him.'

Friday, August 5, 2011

We're Increasing

Mireya woke up today in a really good mood and ready to go to the clinic. I told her I hoped her upbeat mood was indicative of great things going on in her body. In-dica-what....the answer is YES. All counts are up today without growth meds. We are super excited. I've come to realize that appointments are going to require at least a 3 hour commitment and that is without having to do anything out of the ordinary. On occasion a variety of wonderful people donate things to the clinic for the children. This week Mireya picked out some really cute hats created by volunteers at 'Halos of Hope'. In addition she received a "My Pet Butterfly". One of the grandparents of a Hemocker coordinated the delivery of these cool gifts for the kids in clinic this week. There were lots of smiling faces as the kids watched their new 'pets' flying around in the jar. It's really neat, but I will admit it has scared the life out of me on a few occasions randomly flapping and tapping around.

Everyone was pleased with her counts. We are still awaiting the results of the test from last week which will give us a overall look at how the bone marrow transplant has taken by cell make up of boy vs. girl. Reya's kidneys are still lagging behind as a result of the chemotherapy and her magnesium continues to return low. In addition to receiving magnesium via her line, she'll also begin to take it orally to see if we can turn this number around. So we'll tweak a few things and counts at our next appointment will be very telling.

Were at Day 28. Each day we move closer to the 100 Day Mark. Everyday we are praying for an increase in Mireya's health and strength. She reminds us often of how happy she is to be here and out of the hospital. We continue to do all we can to keep her well and at home.

Wednesday, August 3, 2011

Love Will Find A Way

Amy Grant, Pablo Cruise, and even Lion King II had a cute little spin on this sentiment. Remaining connected can feel like a tall task when your running around like a nurse without a degree, who knows enough to be qualified and dangerous, as you prepare to send your first born off to college in less than 8 days, all while managing the pace of things inside a diagnosis that has turned your life upside down.

I'm doing good on any given day that I know my name, what day it is and how many children I have. Everything else I just roll with. Recently someone shared how they wanted to do something really special for Quentin and I because we've been operating like ships just passing in the night. Trust me it starts to feel like 'tag your it' and that our roles just shift to either 'care at the hospital' or 'care at home' with life thrown on top. We're all so happy to finally be at home together and settling into our new routine.

It is important in the midst of all this to find a way to remain connected as best we can, and if possible incorporate time for ourselves. Time for me could be so many things. Quentin enjoys playing basketball. He's been able to enjoy an Open Gym night with a friend of ours at his church. I remember when he and I used to get together with a group of guys from work (and an occasional girl) for a few hours of open gym play. Whew, that was when we were 'younger in love' and the knees could handle all that. And trust me those guys took NO pity on me. It was actually like they played harder against me for having the audacity to come out there, but it was all good. These days we just pull the cars out of the driveway and hoop it up. Momma's got a mean jump shot and Daddy's got a killer crossover. We talk a little bit of junk, d'ing each other up and matching each others shots. On a few occasions the neighborhood kids have gathered to get in on it. That's when we have to team up and show them what we're working with. #TeamBolton in a whole other arena. Yet I digress, I'm having a 'those were the days' Archie and Edith Bunker moment...yikes.

We may be a little off our game due to the parameters of our situation, but we do all we can to remain connected. Dinner together, making time to talk about life, love and things other than counts, appointments and Aplastic Anemia. Sometimes it's taking a walk and enjoying the splendor of everything around us or catching up on our Tivo'd shows. It's a chance to laugh at all the foolishness of reality tv which adds a sense of calm to our own lives. Our sleep cycles have been disrupted and often it feels like we're scrambling for time to do all we could not do during the day at night, but nothing feels better than actually sleeping in the same bed with the man I love! Some nights Mireya has a hard time resting without one of us nearby. Somehow she's got it twisted and thinks Mommy or Daddy are 'her' sleeping partners, although she did have one of us with her every night for almost 60 days straight. Someone mentioned a few weeks ago that they had the idea of taking care of the kids while Quentin and I go to a hotel and just rest. Sounded like a great proposal. Sleep is not overrated, but a hot commodity around here, and eventually we'll get caught up.

It's funny to see how the kids are meshing their worlds to be together. The girls have been solidly playing trains with Jalen. There's a version of Princesses and Dinosaurs, Walking with Beasts and Princesses, Lego Mania and the now infamous 'can we have a sleepover' question 'every' night of the week. They just want to be together as if they are making up for all the days and nights they were apart. We try to do what we can to make our family time meaningful and fun. We want everyone to feel included and loved despite how our lives have been changed. It's important that even though Mireya's getting a lot of attention and a lot of focus is being placed on her that they each know they are special and that we find ways to affirm that with each of them. It's not always easy, and yes we're tired, but it's worth it.

We'll be married 12 years in just a few days and I love this man more than I did even 1 year ago. There's something about the confidence in knowing who you are to one another that your love can be mutually expressed without words. Don't get it twisted, you still have to profess your love, and do things you enjoy together, but also create those new things that show how crazy you still are for one another after all this time, after the kids, after the challenges of life. In the end your still happy and blessed to look in the eyes of the one person who loves you with hair, without hair, skinny as the modeling days or hitting and holding with a few extra lbs per kid. That voice of love, support, reason, and encouragement. Even though we are faced with a demanding situation that is in a very monotonous and regimented stage, we have to make our relationship a priority. We are a reflection of God's love.

We will look back at this time (hopefully from a beautiful and luxurious island) and laugh, and reflect on the goodness of God and what it looks like to come out on the other side with your sanity, with laughter (we get hysterical over here), and holding the hand of the man you still feel so blessed to be married too. I couldn't see myself walking through this with anyone else. Love makes a way!

Tuesday, August 2, 2011

Charitable Love

Charity begins at home and we are the first to position ourselves to be the blessing as we can and as we are led. No one wants to feel like 'a case' but we go back to those pearls of wisdom from AJ 'receive' or we'll just pray and believe for no one to help you with anything else. Some wonderful friends have set up a page on behalf of Mireya and #TeamBolton for those who are led or positioned to be a blessing to support the medical needs, expenses and initiatives we have incurred and will continue to incur over this next year.

At this point, we are in the clinic every other day. $30 takes care of one co-pay for the week. Some of Mireya's medications will be tapered along the way, but currently she is taking 7 different medications that run about $100 every three weeks. Air filtration, flooring, supplies, parking, incidentals it all adds up. We're grateful to have insurance for the mounting medical bills, but we still have percentages of those bills to take care of.

Click here to support 'Mireya's Miracle'

This site has been up for a day and people I've not seen in 15+ years have been a blessing. Many people I know but haven't had the luxury of seeing in quite some time have been a blessing. There are a few who are friends of friends that I've never met. Thank you!!!! We continue to see God's love through the hearts of so many. I've said this before because it is difficult to put into words, but to me it feels like every good thing I've 'ever' done in my life is being returned to me. Imagine every good thing you've ever done for someone being piled at your door to receive. It's tremendous and we're so grateful.

We are so appreciative of those near and far who are moved to be a blessing to us in this way. We have a long road ahead and this will definitely help us to shoulder what we face today and all that is to come. Thank you from the bottom of our hearts for the love. You may have it in your heart to support this effort, but are not in a position to and that is ok. We love the intent and motivation to do so, we ask that you please keep us lifted in your prayers and know that God is working it out and will continue to do so.

Love leads, a servant heart follows, thank you for being a blessing, a help, and such a support. Much love and blessings to you all.

Monday, August 1, 2011

Ever Evolving World of Progress

Reya's appointment today only lasted 3.5 hours. Her counts came up a bit since Friday but her white count is still lagging along with her magnesium. The dosage on one of her anti-rejection medications has been changed. Sometimes when this medication is given at certain levels, it can be prohibitive to the white count. Hopefully we'll begin to see her white count increase a bit more.

A Medical Student started on the floor today shadowing our Physician. Mireya was his first pediatric patient and he was given the task of a full physical and exam. We were on our second run of Barbie's 'The Nutcracker' and I wanted to bang my head against the wall in dread. We've watched this movie at every appointment over the last week for a total of 5 times x 1.5 hours (give me strength). We had time to burn waiting for our lab results and it was a welcome change of pace and entertainment. Now you only get to pull the 'this is my first day, first patient' card once, but, we finally got through it and overall he did a good job and had excellent bedside mannerisms. I think he'll do great.

Reya's platelets have started to increase which is awesome. They've not been higher than about 15k on their own, so we're doing a little Arsenio Hall fist pump over here @ 31k. It will really be great when all three counts are on the rise unassisted by transfusions or medication.

One of our new favorite times of the day is 7pm. That kicks off the Bolton Evening Part-tay on the deck. It's time to light the citronella, get the bubbles machine blowing and kick up the tunes and just chill out. Last night we sat out there well into the night and shut it down with a Family Salsa dance. Jalen and I have decided we'll be hitting the town for a Mother/Son Dance. The kids love to dance and we are known to have dance parties all throughout the week, but they think it's really cool to dance at night under the stars with 'fire' all around us. It's the simple things....continuing not to sweat the small stuff and savoring these moments together.