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.

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)

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.'

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.

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!

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.

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.