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!

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.

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!

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)
¹Make 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.

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.

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)?